Introduction to the Conference

Introduction to the conference

In spite of increasing demand in the health sector, this area faces a shortage of resources. On the other hand, the prerequisite for good management in these circumstances is the existence of an efficient and effective information system to provide reliable and quality information at the right time for managers. Today, many of the achievements of medical knowledge can be attributed to the analysis and data mining of data collected from disease registration systems and health outcomes. These systems provide better health care services for patients, help managers make decisions and plan and facilitate health research. Registry is a systematic collection of data from a specific disease (such as cancer, AIDS), exposure to substances or high-risk events (such as chemicals), or trauma and treatment (such as planting medical devices). Collected data, data collection methods, reports created and their use vary according to the type of registry. Registries may vary in terms of purpose, location, coverage level, and type of organization that creates it. Considering the importance of the issue, officials from the Ministry of Health and Medical Education and Medical Sciences Universities have already started planning for the development of a registry of diseases and health outcomes. Due to the width and complexity of the issues related to this area and the diversity of the registry plans, there are many unresolved problems and unanswered questions in this regard, which requires the wisdom and collaboration of experts and researchers who in this domain are clear sighted. On the other hand, given that the success of most registry programs depends on the coordinated action of the authorities and the integrity of the data collected, the introduction of programs and activities carried out or ongoing ones at home and abroad and the familiarity of the authorities with the plans Registration of these programs will be very valuable. In this regard, the Ministry of Health and Medical Education, in cooperation with the Disease Register, intends to host the 2nd International Conference on Disease and Health Outcomes in December 2018.The main objectives of the conference are, the registry of diseases and health implications, familiarizing with the experiences and latest scientific achievements of individuals, organizations and countries in the field of setting up registry plans, examining challenges and solutions, and thinking about the formulation of protocols and guidelines in the same way. This is the domain. It is hoped that holding this program could make health care services better for patients in the country.

1 11-13 December 2 0 1 8

Conference Topics

Protocols and management of registry systems Classification & coding Role of health information technology in disease registries The role of disease registries to promote health care system quality Quality control methods in registry programs Analytical methods in disease registries Ethics ,data ownership & data exchange in registries Bio banks and registry programs The role of registries in health care system and control of non-communicable diseases

Persian Gulf, Iran

2 Higher Policy Council of the Conference

The Members of the Policy Council of the Conference:

Dr. Reza Malekzadeh Deputy Director of Research and Technology of the Ministry of Health and Medical Education Sciences And the Head of the Conference

Dr Kazem Zendehdel Deputy Advisor for Research and Technology and responsible for the Disease registry and Health Outcomes program. And the Scientific Secretary of the Conference.

Dr. Azin Nahvijou Faculty Member of Tehran University of Medical Sciences And Health Services And Executive Secretary of the Conference

Dr. Abbasali Karimi Dean of Tehran University of Medical science Member of the Conference Policy Council And

Dr. Mohammad Ali Sahraeian Deputy Research Director of Tehran University of Medical Sciences and Health Services Member of the Conference Policy Council And

3 11-13 December 2 0 1 8

Dr. Bagher Larijani Deputy Minister of Medical Education, Ministry of Health and Medi- cal Education Sciences Member of the Conference Policy Council And

Dr. Ghasem Jan Babaeei Deputy Minister of treatment, Ministry of Health and Medical Edu- cation Sciences Member of the Conference Policy Council And

Dr.Alireza Raeisi Deputy Minister of Healthcare, Ministry of Health and Medical Edu- cation Sciences Member of the Conference Policy Council And

Dr. Afshin Ostovar Chairman of the Committee of Noncontagious Diseases, Ministry of Health and Medical Education Sciences Member of the Conference Policy Council And

Dr. Seyyed Mahmood Tara

Head of Statistics and Information Technology Office, Ministry of Health and Medical Education Sciences Member of the Conference Policy Council And

Dr. Shahin Akhoond Zadeh Deputy Advisor for Research and Technology, Ministry of Health and Medical Education Sciences Member of the Conference Policy Council And

4 Scientific Committee

Dr. Kazem Zendehdel Dr. Reza Malekzadeh Dr. Gholamreza Roshandel Dr. Ghasem Janbabaeei Dr. Mohammad ali Sahraeian Dr. Saeed Eslami Dr. Habibollah Pirnejad Dr. Fatemeh Sadat Nayeri Dr. Asghar Agha Mohammadi Dr. Hamid Reza Jamshidi Dr. Nader Saki Dr. Afshin Ostovar Dr. Azin Nahvijou Dr. Zahra Azad Manjir Dr. Saeed Amanpour Dr. Farzad Mohammadi Dr. Abbas Rezaianzadeh Dr. Ansieh Nasli Esfahani Dr. Masoud Malekzadeh Dr. Hossein Poustchi Gholamreza Hassanpour Dr Alireza Sima Dr. Vafa Rahimi Movaghar Dr. Seyed Kamran Kamrava Dr. Khalil Kimiyafar Dr. Nazal Sarrafzadegan Dr. Reza Alizade Navaee Dr. Ardeshir Khosravi Dr. Seyed Mahmmod Tara Dr. Alireza Khosravi Farsani Dr. Farid Najafi Dr. jila Agah Dr. Shadman Nemati Dr. Fattane Bakhshi Dr. Saeed Dastgiri Dr. Homayoun Sadeghiv Dr. Majid Fasihi Harndi Dr. Shahnaz Mojarab Dr. Nasrin Azari Dr. Hasan Shahrokhi Dr. Ali Akbar Haghdoust Dr. Fariborz Mansour Ghaneii Dr. Masoomeh Abbasi Dr. Arash Golpazir Sorkhe Dr. Ali Mohammadi Dr. Arash Bayat Dr. Zahra Niazkhani Dr. Hossein Dalili Dr. Golnaz Rezaee Zadeh Dr. Mamak Shariat Dr. Morteza Mahmoodi Dr. Asghar Haji Abbasi Dr. Abbas Sheikh Taheri Dr. Marjan Ghazi Saeedi Zeinab Ghazizadeh Dr Sharareh Rostam Niakan

5 11-13 December 2 0 1 8

The Executive Committee

Dr. Azin Nahvijou, MD, PhD Executive Secretary

Dr. Mohammad Moeed Malekzad Executive Planning Secretary

Eng. Bahar Giti Deputy of Planning director Scientific Planning Secretary Zeinab Ghazizadeh Monireh sadat seyyedsalehi Administrative & Financial Affairs Hamidreza Abedini Alireza Rezaie Mehr Bita Sadeghi Public Relations Haniyeh Talebi Registration & Public Relations Zahra Moosavi Mohammad Tavakoli Emad Imani Zahra Mafikandi Reza Sameie Azra Kaseb Ahadi Zahra Alizadeh Ali Dolati Alireza Sameie Alireza Asgari Ahmad Soltani Ehsan Jafari Zahra Galavi Amir Deghatipour Atefeh Abbasi Shahabbedin Eskandari Donya Ghaderidoust Fatemeh Zahra Mahmoudi

6 Logistics Planinig Mahmood Savari Exhibition & Sponsorship Shirin Asadallohi Nafiseh Hassanloo International Affairs Ehsan jalali Bahram Logistics & Support Saeed Sharifzad Noor Mohammad Rasoli Technical & IT Mohammad Golkar Milad Mehdizadeh Mehdi Omidi

Rudkhan Castle, Gilan- Iran

7 11-13 December 2 0 1 8

Elisabete Weiderpass, 1966; Current positions: Head of Research Department, Cancer Registry of Norway, Oslo, Norway (2015); Sweden Professor in Medical Epidemiology, MEB, Karolinska Institute, Elizabete Weiderpass Stockholm, Sweden (2011); Professor of Cancer Epidemiology, Department of Community New Director of International Agency for Medicine, UiT, The Arctic University of Norway, Tromsø (2018); Research on Cancer(IARC) Group Leader, Genetic Epidemiology Group, Folkhälsan Research Center and Faculty of Medicine, University of Helsinki, Finland (2007).

03/09 – 99/02 he worked as Medical Doctor in a Public Health Center Izmir. 03/09 – present he working at Izmir Cancer Registry. Since September 2003, He works at Izmir Cancer Registry. In the past 12 years he had participated in several lectures, courses and meetings about Cancer Registration and interpreting the data collected. he became a consultant for CanReg4 and computer based management of databases in Turkey. he have been working as a Turkey lecturer for Canreg4 trainings countrywide. Cankut Yakut he is also working on the quality control of data process and Izmir Cancer Registry attending courses / meetings on this subject as a member of the faculty.

8 Organization Royal Statistical Society in UK Organ Transplantation Quality Monitoring Committee, China Transplant China Physician Society Donation and Transplant Institute Spain DTI Foundation Wenshi Jian “EU-China Knowledge Transfer and Leadership in Organ Donation Program” Intelligence Sharing for Life Sci- co-funded by the Erasmus+ European Union ence Research Institute Intelligence Sharing for Life Science Research Institute (Shenzhen) Ltd Hospital of PLA

Organization ChinaLiverTransplantationRegistry DonsonTechnology(Shenzhen)Ltd IntelligenceSharingforLifeScienceResearch Institute(Shenzhen)Ltd DongguanUniversityofTechnology, GuangdongProvince,China China

JiaweiCai Intelligence Sharing for Life Sci- ence Research Institute

9 11-13 December 2 0 1 8

Prospective Epidemiological Research Studies in IrAN (PERSIAN) Hossein Poutschi, Reza Malekzadeh Liver and Pancreatobiliary Diseases Research Center, Digestive Diseases Research Institute, Tehran University of Medical Sciences, Tehran, Iran.

Non-communicable diseases (NCDs) account for over 80% of deaths in Iran and this number is on the rise. To identify and prevent risk factors associated with NCDs, observational studies are necessary. Since Iran is a multi-ethnic country, the Ministry of Health and Med- ical Education sought to launch a nationwide cohort study—the Prospective Epidemio- logical Research Studies in IrAN (PERSIAN)—in 2014 in order to identify the most prevalent NCDs among Iranian ethnicities, and to investigate effective methods of prevention. The PERSIAN cohort consists of five population-based cohorts—birth, youth, adult, elderly and employee groups—aiming to include 200,000 individuals from 25 provinces of Iran. Participants are followed for at least 15 years. Given the detailed protocols and questionnaires used in the follow-up phase of the cohort studies, the PERSIAN Cohort data can be compared to data from disease registries and hospital information systems throughout Iran, to fill-in the voids in each data set. The PERSIAN Cohort is equipped with a smart sever and a modern databank, providing easy access to high quality and reliable data. Keywords: Cohort, Iran, Non-communicable diseases, NCD, PERSIAN

Iran National Tumor Bank; Its goals and role in cancer research and its current achievements Amirnader Emami Razavi*, Fatemeh Kamali, Forouzandeh Fereidooni, Ahmad Joulaei, Alireza Abdollahi Iran National Tumor Bank, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran

Introduction: A tumor bank is an organization responsible for collecting, cataloging, storing and dis- seminating samples of tissues, cells and fluids for the investigation of diagnostic molecular markers, definition of prognosis and identification of therapeutic targets, for facilitating the discovery of new therapies and new drugs, and for other applications yet to be discovered. Iran national Tumor Bank (INTB), the only tumor bank in Middle East and one of the 24 globally registered tumor banks, was created in 2006 in Cancer Institute of Iran, with the goal of aiding a new line of research in oncology. Having these biological materials available and characterized, along with the clinical information of the patients, provides an integrated portrait of the patients and their illnesses, enabling advances in molecular biology. Methods: Two principles of Iran national Tumor Bank are the accuracy of clinical information and

10 outcome of patients treated by cancer and the quality of tumor samples that will allow the search for molecular abnormalities involved with neoplastic development and progression. Standard operating procedures (SOPs) have been implemented for various INTB procedures. Samples are commonly stored in the tumor bank in the form of fresh-frozen tumor tissue, fresh adjacent normal tissue, Paraffin-embedded tumor and normal adjacent tissue, as well as blood products including plasma and buffy coat. All samples have been collected base on ethical permission and obtaining written informed consent from all donors by Iran National Tumor Bank. Results: Till now, INTB has an inventory of 34 different types of tumors from more than 2200 donors which include about 500 cases of breast, 400 cases of gastric cancers, 230 cases of ovary, 220 cases of colorectal, 150 cases of skin, 145 cases of head and neck, 120 cases of sarcoma, 70 cases of uterus and 400 cases of other cancers. INTB has provided detailed information as well biological samples for more than 200 different cancer research projects from home and also internationally recognized centers, including International Agency for Research and Cancer (IARC) and the Karolinska Institute. INTB has also been a resource for over 70 research literatures published in the prominent journals. Conclusions: INTB with an effective protocol allows researchers to access tumor tissue samples under ideal conditions for research and recovery of patient data. This systematic organization of information allows the development of cancer research with solid scientific conclusions. Tumor banks may be useful in the future, because the number of surgeries for tumor removal will reduce because of constant medical and technological advances in early diagnosis and pre-operative therapies, thus compromise the accumulation of tumor tissue. Therefore, a network of tumor banks must be organized to ensure appropriate and responsible use of the materialsudies in IrAN (PERSIAN)—in 2014 in order to identify the most prevalent NCDs among Iranian ethnicities, and to investigate effective methods of prevention. The PERSIAN cohort consists of five population-based cohorts—birth, youth, adult, elderly and employee groups—aiming to include 200,000 individuals from 25 provinces of Iran. Participants are followed for at least 15 years. Given the detailed protocols and questionnaires used in the follow-up phase of the cohort studies, the PERSIAN Cohort data can be compared to data from disease registries and hospital information systems throughout Iran, to fill-in the voids in each data set. The PERSIAN Cohort is equipped with a smart sever and a modern databank, providing easy access to high quality and reliable data. Keywords: Cohort, Iran, Non-communicable diseases, NCD, PERSIAN

11 11-13 December 2 0 1 8

Iran Pituitary Tumor Registry: Where do we stand?

1 2 1 Mohammad Ebrahim Khamseh , Mojtaba Malek , Nahid Hashemi Mdani , Mohammad Reza Mohajeri Tehrani 3, Mohammad Ghorbani4, Hamideh Akbari1 1. Endocrine Research Center, Institute of Endocrinology and Metabolism, Iran University of Medical Sciences (IUMS), Tehran, Iran. 2. Research center for prevention of cardiovascular disease, Institute of Endocrinology and Metabolism, Iran University of Medical Sciences (IUMS), Tehran, Iran. 3. Endocrinology and Metabolism Research Center, Endocrinology and Metabolism Clinical Sciences Institute, Tehran University of Medical Sciences (TUMS), Tehran, Iran. 4. Department of Neurosurgery and Neuro-Intervention, Firoozgar hospital, Iran University of Medical Sciences (IUMS), Tehran, Iran.

Patient registry is “an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individual persons who have a particular disease that predisposes them to the occurrence of a health-related event.” The major purposes of registry are to describe the natural course of disease, to determine the cost-effectiveness of different therapeutic modalities, and to improve quality of care. Pituitary tumor registry could provide a basis for early identification of patients with pituitary tumors, compare various management strategies and long-term outcomes. There are several registries on pituitary disease throughout the world. Iran Pituitary Tumor Reg- istry (IPTR) is a patient registry established by Institute of Endocrinology and Metabolism affiliated to Iran University of Medical Science as a tertiary referral center for endocrine disorders. The program was recognized as a national registry by the ministry of health in 2014. It provided a basis for collaboration with other referral centers. Up to now, 1179 individuals have been registered to the system. They are including 269 cases of prolactinoma, 252 cases of acromegaly, 158 cases of non-functioning pituitary tumor, and 101 cases of cushing’s disease. Moreover, 399 subjects registered as preliminary are under evaluation for definite diagnosis. In addition, some articles have been published on different aspects of pituitary tumors and there are also several projects under investigation. We hope to provide comprehensive data on different aspects of pituitary tumors to be applied both for improving patient care and reducing morbidity and mortality of the patients as well as to be used for further scientific investigations in this respect.

National Spinal Cord Injury Registry of Iran (NSCIR-IR); Use the Registry to Capacity Building Services

Vafa-Rahimi-Movaghar1,Zahra Azadmanjir1, Khatereh Naghdi1, Zahra Ghodsi1, Mahdi Sharif- Alhoseini1, Habibollah Pirnejad2, Homayoun Sadeghi-Bazargani3, Moin Khormali1, Amir 1 4 5 Azarhomayoun , Zahra Mohtasham Amiri , Zahra Khazaeipour 1. Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran 2. Department of Health Information Technology, Urmia University of Medical Sciences 3. Road Traffic Injury Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 4. Guilan Road Trauma Research Center (GRTRC), Guilan University of Medical Sciences, Rasht, Iran 5. Brain and Spinal Injuries Research Center (BASIR), Imam Khomeini Hospital, Tehran University of Medical Sciences, Tehran, Iran

12 Introduction: Registry value depends on its use. Even if the registry produces high-quality data, it will not be useful unless identified patient problems or improving patient care. Now, after three years from the start of NSCIR-IR (National Spinal Cord Injury Registry of Iran), we are trying to make the best application of recorded patient data for improving patient care. Moreover, we find NSCIR-IR weaknesses and promote registration processes. Methods: NSCIR-IR is a national hospital-based registry designed to prospectively register patients with traumatic spine fractures/ dislocations, with or without SCI, admitted to the neurosurgical or orthopedic services. The pilot phase continued from October 2015 to May 2016. Then, we implemented our ongoing registry in seven centers in six cities (Tehran, Rasht, Kashan, Urmia, Tabriz, and Yazd) in Iran. Our registry program was not successful in the two our participating centers, in Shiraz and Shahrud. In collaboration with different international and national advisors, various studies were being carried out on the collected data. Results: A total of 1156 patients were registered by September 27; Out of these registered cases, 634 (55 %) were verified; 88 (8%) were incomplete, 297 (26%) were under review, in 108 (9 %) case a feedback had been sent to the registrars for potential revision or response, and 29 (2%) were rejected. 83 (7%) patients had SCI. Distribution of injury severity in spinal cord injury patients according to ASIA score of A, B, C and D were 57 (69%), 6 (7%), 10(12%), 10(12%), respectively. Thirty eight SCI patients 38 (46%) were paraplegics; 10 (12%) paraparetics, 23 (28%) quadriplegics, 7 (8%) quadriparetics, 2 (2%) hemiplegics and 3 (4%) hemiparetics. Short-term patient outcome was: 14 (17%) fatalities, 4 (5%) recovery, 38 (46%) severe disability, 14 (17%) moderate disability, 7 (8%) mild disability, 6 (7%) discharge against medical advice (AMA). NSCIR-IR has published two papers about pilot phase; sustainability of the registry. The studies that are based on the registry data are including, (i) Differences in vertebral fractures between car drivers and motorcycle riders, (ii) Quality of care in SCI/Spinal fractures in 600 patients; a pilot study in 4 centers, (iii), One year follow-up of complications and neurological changes individual with SCI, (iv), Define the patient-reported outcomes measures (PROM) for people with spinal cord injury/ spine fracture to evaluate health status, quality of life and life satisfaction. (v) Indicators of Quality of Care in Patients with Traumatic Spinal Cord Injury; Scoping Review (vi) Evaluation of Quality of Care in Traumatic Spinal Column and Cord Injuries (TSC/SCI) in I.R Iran, that was submitted to National Institute for Medical Research Development (NIMAD). Moreover, we’re trying to accept four other projects by the AOSPINE. It has suggested that the registry could be extended to the Middle East countries. In discussion, we explain the problems which we confronted and the solutions we found as well as our ongoing difficulties and concerns. To motivate and encourage colleagues and researchers we have designed two type of award including NSCIR-IR International Impact Award and National Outstanding Researcher Award. International award was given at Global Spine Congress 2018 in Singapore and National Award was given at Tehran University of Medical Sciences. In addition, the software infrastructure that created for NSCIR-IR has been used by more than 21 other registries. With the participation of the Students ‘Scientific Research Center (SSRC) of TUMS, students can participate in research studies related to registry. We received the offer of cooperation with Surgical Timing in Acute Spinal Cord Injury Study (STASCIS)

13 11-13 December 2 0 1 8 and The Reeve Foundation North American Clinical Trials Network (NACTN). So we are investigating legal aspect of the cooperation. Conclusion: Data of NSCIR-IR are utilized in different research studies that could be useful for improving the care system in Iran. We use the registry to capacity building.

Research Protocol: The Design and Establishment of Inherited Retinal Disease Registry in Iran

Hamideh Sabbaghi1, MS; Hamid Ahmadieh1, MD; Narsis Daftarian1,2, MD; Fatemeh Suri 1, PhD; Mehraban Mirrahimi2, MS; Sina Madani3, MD; Abbas Sheikh Taheri4, PhD; Farid Khorrami 5, PhD; Proshat Saviz4, BS; Ali Tivay6, MS; Mohammad Zarei Nejad6, PhD; Amir-Hossein Mahmoudi7, MD; Zhale Rajavi1,8, MD; Marzieh Katibeh8,9, MD, MPH, MS; Hossein Ali Shahriari10, MD; Alireza Maleki10, MD; Hassan Behboudi11, MD; Seyed Maryam Hosseini12, MD; Naser Shoeibi12, MD; Masoud Reza Manaviat13, MD; Monireh Sargazi10, MS; Seyed Sajad Ahmadi10, MD; Mehdi Yaseri14, PhD; Shahnaz Mojarrab15, PhD; Saied Shahraz16, MD; Mahtab Salami1, BS; Kiana Hassanpour1, MD; Mehrdad Afarid17, MD; Ahad Sedaghat18, MD; Mohammad Feghhi19, MD; Hassan Khojasteh20, MD; Mohammd Reza Akhlaghi21, MD; Hamid Reza Ariayee Tabar22, MD

1. Ophthalmic Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran 2. Ocular Tissue Engineering Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran 3. Department of Information Technology Integration, Vanderbilit University Medical Center, Nashville, TN, USA 4. Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran 5. Department of Health Information Technology, Hormozgan University of Medical Sciences, Bandar Abbas, Iran 6. New Technologies Research Center, Amirkabir University of Technology, Tehran, Iran 7. Ophthalmic Research Center, Department of Ophthalmology, Razi Hospital, Tehran, Iran 8. Ophthalmic Epidemiology Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran 9. Center for Global Health, Department of Public Health, Aarhus University, Denmark 10. Al-Zahra Eye Centre, Zahedan University of Medical Sciences, Zahedan, Iran 11. Department of Ophthalmology, Guilan University of Medical Sciences, Rasht, Iran 12. Eye Research Center, Mashhad University of Medical Sciences, Mashhad, Iran 13. Department of Ophthalmology, Shahid Sadoughi University of Medical Sciences, Yazd, Iran 14. Department of Epidemiology and Biostatistics, Tehran University of Medical Sciences, Tehran, Iran 15. Deputy of Research and Technology, Ministry of Health and Medical Education, Tehran, Iran 16. Tufts Medical Center, Boston, Massachusetts, USA 17. Department of Ophthalmology, Poostchi Ophthalmology Research Center, School of Medicine, Shiraz University of Medical Sciences, Shiraz, Iran 18. Eye Research Center, Rasool Akram Hospital, Iran University of Medical Sciences, Tehran, Iran 19. Department of Ophthalmology, Ahvaz University of Medical Sciences, Ahvaz, Iran 20. Eye Research Center, Farabi Eye Hospital, Tehran University of Medical Science, Tehran, Iran 21. Department of Ophthalmology, Isfahan University of Medical Sciences, Isfahan, Iranenter,

14 Abstract Purpose: To describe the protocol and the first report of the national Inherited Retinal Dystrophy Registry (IRDR) establishment in Iran. Methods: This study is a community- based participatory research that was approved by the Minis- try of Health of Iran in 2016. To provide the minimum data set (MDS), several focus group meetings were held with participation of the faculty members of the ophthalmology department and the epidemiology and biostatistics sections of the Ophthalmic Research Center affiliated to Shahid Beheshti University of Medical Sciences (SBMU). Thereafter, the final MDS was presented to the software engineering team to design the web-based software. In the pilot phase, software was set up in two referral centers in different regions of Iran to identify the probable drawbacks of project implementation. Afterwards, the national collaborative phase was started at 13 eye research centers in different provinces. Currently, patient recruitment is performed actively and a unique identifier code has been automatically assigned to each patient to avoid any repetition in data entry. All information including demographic, hereditary, ocular and systemic conditions as well as visual and ophthalmic examinations are registered. Final diagnosis is recorded based on the International Classification of Diseases (ICD-11), Corrosion Under Insulation (CUI), Online Mendelian Inheritance in Man (OMIM) and Systematized Nomenclature of Med- icine-Clinical Terms (SNOMED-CT). The steering committee meeting is held each year with the presence of delegates of all centers. The IRD registry has also equipped with a comprehensive bio-bank containing the blood sample of all registered patients and their families. Genetic testing was also performed for about one third of them using the next generation sequencing (NGS). Results: Data have been entered into the web-based software via the address link of www.IRDReg. org by trained technicians throughout the country since February 2016. Up to now, a total of 1000 patients with the diagnosis of IRD have been registered by the active branches throughout the country. About half of the registered patients had a diagnosis of retinitis pigmentosa (RP), followed by cone- rod dystrophy (13.3%), Leber’s congenital amaurosis (LCA; 10.2%) and Usher syndrome (7.4%). etc. The disease causing mutations were identified in about 80% of the registered families in whom 65% have not previously reported as IRD causing agents. Definite diagnosis was confirmed by genetic testing in 27% of the registered patients. Conclusion: Our study as a proof of concept model of the first IRD registry showing successful web- based software design and data collection. These data will help the researchers to have deep understanding of the distribution and genetic patterns of this complicated retinal disease in Iran for future prophylactic and therapeutic strategies. Keywords: Inherited Retinal Dystrophy; Registry; Bio-bank; Next Generation Sequencing; Iran

15 11-13 December 2 0 1 8

Iranian Registry of Crohn’s and Colitis (IRCC): First nationwide IBD registry in Middle East, a study protocol

Masoud M Malekzadeh1, Alireza Sima1, Sudabeh Ala tab1, Anahita Sadeghi1, Nasser Ebrahimi Daryani2, Payman Adibi3, Iradj Maleki4, Hassan Vossoughinia5, Hafez Fakheri4, Abbas Yazdanbod6, Seyed Alireza Taghavi7, Rahim Aghazadeh8, Mohammad Hassan Somi 9, Kazem Zendedel10,11, Homayoun Vahedi1, Reza Malekzadeh1

1. Digestive Disease Research Center, Digestive Disease Research Institute, Shariti Hospital, Tehran University of Medical Sciences, Tehran, Iran 2. Department of Gastroenterology, Imam Khomeini Hospital, Tehran University of Medical Sciences, Tehran, Iran 3. Gastroenterology Section, Department of Internal Medicine, Isfahan University of Medical Sciences, Isfahan, Iran 4. Gut and Liver Research Center, Mazandaran University of Medical Sciences, Sari, Iran 5. Department of Gastroenterology and Hepatology, Ghaem Hospital, Medical Faculty, Mashhad University of Medical Sciences, Mashhad, Iran 6. Department of Medicine, Ardabil University of Medical Science, Ardabil, Iran 7. Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran 8. Gastroenterology and Liver Diseases Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran. 9. Liver and Gastrointestinal Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 10. Deputy of Research, Ministry of Health and Medical Education, I.R. Iran 11. Cancer Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iraner, Kermanshah University of Medical Sciences, Kermanshah, Iran Abstract Background: A recent nation-wide study of Inflammatory Bowel Disease (IBD) from Iran revealed a rapidly increasing incidence and prevalence. The best epidemiologic study to assess the burden and improve the care of IBD is a Population-based registry. The Iranian Registry of Crohn’s and Colitis (IRCC) was established recently to answer the needs. We aimed to report the design, methods of data collection, and aims of IRCC to enlighten the strengths and limitations of this project. Method: IRCC is multi-center prospective registry, which is established with collaboration of about 100 gastroenterologists who are providing care for IBD patients in different provinces of Iran. Minimum data set for IRCC was defined according to an international consensus on standard set of outcomes for IBD. The questionnaire was designed accordingly in order to make the data collection feasible in clinical setting. Feasibility of study was tested using a pilot study on 553 IBD patients with a web-based questioner. During and after the pilot study many revisions was made on questionnaire and software according to feedback of registrars and members of IRCC. The reliability of each section of questionnaire evaluated by Cronbach’s alpha. For testing effect of any risk factor or specific condition or treatment on subtypes of IBD or disease activity we used chi square test and ANOVA. P-value less than 0.05 considered significant.

16 Result: In pilot study, 312 (56.4%) of participants were male and mean age was 38 years (Standard deviation=12.8) and 378 (68.35%) patients had ulcerative colitis, 303 (54,7%) had college education and 358 (64.74%) were of Fars ethnicity. Among this sample, 68 (12.3%), 44 (7.9%), 13 (2.3%) of participants were smokers, hookah and opium users respectively. His- tory of appendectomy was reported in 58 (10.48%) of patients. The most consumed drug was 5-ASA (94.39%). The reliability of each section of questionnaire were checked and most sections had α>0.6. We established a well-designed registry with standard data set in order to better study IBD in Iran Conclusion: To best of our knowledge, IRCC is the first national level IBD registry running in Middle East and could become a reliable infrastructure for national and international research on IBD and at the same time improve the care of IBD patients and provide national information for policy makers to better plan for controlling IBD in Iran. Keywords: Inflammatory bowel disease, Registry, Iran

Meniere’s Disease Registry Program, steps of quality control

Shadman Nemati1, Fataneh Bakhshi2*, Fatemeh Nezamdust3, Mir Mohammad Jalali1, Matin Ebrahimi4, Adel Karamzadegan5, Ali Faghih Habibi6 1. Professor, Rhino-sinus, Ear, and Skull base Diseases Research Center, Department of Otolaryngology and Head and Neck Surgury, Amiralmomenin Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran 2. Assistant Professor, Social Determinants of Health Research Center and Department of Community Health Nursing, School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran 3. Msc of Health Service Management, Rhino-sinus, Ear, and Skull base Diseases Research Center, Department of Otolaryngology and Head and Neck Surgury, Amiralmomenin Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran 4. Otolaryngologist, Rhino-sinus, Ear, and Skull base Diseases Research Center, Department of Otolaryngology and Head and Neck Surgury, Amiralmomenin Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran 5. PhD of Business Administration-Major Commercial Diplomacy, Information of technology office, Guilan University of Medical Sciences, Rasht, Iran 6. Assistant Professor, Rhino-sinus, Ear, and Skull base Diseases Research Center, Department of Otolaryngology and Head and Neck Surgury, Amiralmomenin Hospital, School of Medicine, Guilan University of Medical Sciences, Rasht, Iran Abstract Introduction: Meniere’s disease (MD) is a disabling condition and an inner ear disease, the pathologic basis of which is membrane labyrinth degeneration and endolymphatic hydrops, and its main symptoms are true vertigo and hearing loss. Regarding the importance of this disease, which is associated with one of the worst and most devastating human complaints, i.e. vertigo, and due to the high number of clients with symptoms of MD in the health centers of Guilan province and the whole country, the registry system of this disease in diagnostic and therapeutic centers of Guilan and other provinces with the aim of collect-

17 11-13 December 2 0 1 8

ing clinical data of patients and following their disease related quality of life can be very helpful for health system providers. Considering quality control at all stages of this registry system is essential to improving the process. Method: The quality control measure was performed based on the nature of the disease and the need for appropriate care guidelines, based on the data for care delivery checklist. The checklist include the generation of outputs that promote care delivery and coordination at the individual patient level (e.g., decision support, patient reports, reminders, notifica- tions, lists for proactive care, educational content) and the provision of tools that assist with population management, quality improvement, and quality reporting (e.g., risk ad- justment, population views, benchmarks, quality report transmissions). Results: The suitability of data quality related to the input section. Defective data on the second part of the Care delivery and coordination due to lack of proper patient participation planning. The relative quality of the third part, population measurement and quality improvement, which will be achieved by the improvement of the previous part. Discussion: To have a patient-based care registry, the maximum participation of patients in the subsequent care and treatment process is mandatory. Also, the role of physicians and information technologists who are involved in registry program cannot be forgotten, especially in education of the patients. Keywords: Meniere’s Syndrome or Disease- Registries- Quality control

MS registry system, quality control for management and services Sharareh Eskandarieh, Mohammad Ali Sahraian* MS research center, Neuroscience institute, Tehran University of Medical Sciences, Tehran, Iran Guilan University of Medical Sciences, Rasht, Iran

Abstract Introduction: In order to use the population-based MS registration program in health policy, the registration system & process should be in good quality, then the quality of data and results can be trusted. The quality control is needed in process of MS registry system including: program and questionnaires design, patient identification, software for data entry and management, data modification and cleaning, data transmission and analysis, reports and information archives. Objective: improving quality of care and services for patients with MS. Method: To perform quality control and management of MS patient’s data, standardized questionnaires and DHIS2 software have been used. 18 We design a valid and reliable registry form, to utilize national MS minimum dataset. DHIS2 software is open-source web-based software that allows the user to designate the contents of a specific information system without the need for programming. Result: 1. providing comprehensive data management based on principles of data collection at various levels and support. 2. Customization and regional compatibility through the interface. 3. Data entry and reports based on standard lists or tables. 4. Provide various tools for validating data and improving quality control. Discussion: The main axis of quality control of MS records is the quality of registration processes, the quality of data collection and records and measurement indicators in controlling the quality of records. References Swedish Health Care, Improved Results in Healthcare Using Quality Registries. http:// www.swedishhealthcare. A need for national registries and international collaborative research in multiple sclerosis .Myhr KM, Grytten N, Torkildsen Ø, Wergeland S, Bø L, Pugliatti M. Acta Neurol Scand 2012: 126. Dreyer NA, Schneeweiss S, McNeil BJ, et al. GRACE principles: recognizing high-quality. Observational studies of comparative effectiveness. Am J Manag Care. 2010 Jun;16(6):467- 71. 4 - L. Emilsson, B. Lindahl, M. K€oster, M. Lambe J. F. Ludvigsson. Review of 103 Swedish Healthcare Quality Registries. Journal of Internal Medicine. 2015, 277; 94–136.

Design and Implementation the HTLV-1 and Associated Diseases Registry

Houshang Rafatpanah1, RezaBoostani2, Fariba Zomorshidi2, Khalil Kimiafar*3, Masoumeh Sarbaz3, Zohreh Vahidi1

1. Immunology Research Center, Division of Inflammation and Inflammatory Diseases, Mashhad University of Medical Sciences, Mashhad, Iran 2. Department of Neurology, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran 3. Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran

Immunology Research Center, Division of Inflammation and Inflammatory Diseases, Mashhad University of Medical Sciences, Mashhad, Iran Department of Neurology, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran Corresponding author: Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, 19 11-13 December 2 0 1 8

Azadi Square, PardisDaneshgah, Mashhad, IR Iran, Tel: +98-5138846728, E-mail: [email protected] Introduction: HTLV-1 virus is human T-lymphotropic virus Type 1 and a member of the retroviruses family. This virus can cause serious diseases such as Adult T-cell Leukemia/Lymphoma (ATL) and HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). Around 15-25 million people in the world, especially in endemic areas are carrier this virus. This virus infects many people in the world, yet in some regions like Japan, the Caribbean basin, central and South Africa, Taiwan, parts of the Middle East and the Southeastern United States is endemic. Northeast of Iran also is included in such areas of endemic. So the registration system can provide the requirements for conducting systematic researches in the longtime and using from recorded data for practical research projects. The aim of this study was to design the HTLV-1 and associated diseases registry. Method: In this study, minimum data set (MDS) was designed separately for carriers of HTLV-1 and HAM/TSP patients. First, researches conducted and registries designed in other countries were investigated. Moreover, observation of admission processes, discharge, registration and filing of medical records, diagnosis, treatment, and post-treatment follow-up were carried out for patients referring to hospital and HTLV-I clinic in Mashhad University of Medical Sciences. Primary data elements were extracted. A group of observers was missioned for providing the minimum data set which was in charge of leading and communicating between experts during the process of providing the minimum data set. Minimum data set were approved using Delphi technique in two stages. Then, the features all of the variables which were to be registered were collected under the data dictionary. Those features include the type and the role of the variables, their definitions, the necessary procedures to measure them, and their scale. Finally, design a database and a web-based registry software were conducted in a way that enables a detailed registration and ease of information access for the users of the system. Results: A total of 338 data elements were extracted for HTLV-1 carriers and 649 data elements for HAM-TSP patients among 115 articles and sources. After the last round of study and 5 sessions of focus group, the results were presented in a form with respect to the ranking under such titles, minimum, maximum and optimum data set of HTLV-1 and the associated diseases which included 197 data elements for carriers and 328 data elements for HAM-TSP patients. Data elements related to carriers’ follow up and patients with associated myelopathy were selected from data elements designed based on experts’ opinions. Conclusion: creating a database with demographic and clinical data, lab observations on HTLV-1 and the associated diseases will lead to the establishment of an infrastructure for research in this area at national and international levels, as well as prevention of parallel work and reducing costs pertaining to this illness. Moreover, it will provide the way for an improvement in diagnosis and treatment processes, comparison of the results from different treatment methods, determining demographic characteristics of patients and determining the disease progress during the time, identifying of incidence and prevalence of HTLV-1 and the associated diseases. Keywords: HTLV1- , HAM-TSP, Registry

20 Report of Registry secretariats in Tehran University of Medical Sciences

Azin Nahvijou1, Mohammad Ali Sahraian2, Shekoufeh Nikfar3, Fatemeh Javadi4

1. Cancer Research Center of Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran 2. MS Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran 3. Department of Pharmacoeconomics, Faculty of Farmacy, Tehran University of Medical Sciences, Tehran, Iran 4. Deputy of Research, Tehran University of Medical Sciences, Tehran, Iran

Patient registries are useful databank for policymakers, healthcare professionals and researchers. The most important objective of patient registries is to promote the quality of care. The patient registries provide good source of information about specific diseases. The secretariat of registry of patient registries (RoPR) of Tehran University of Medical Sciences had been established in summer 2018 in deputy of research. The objectives of PoPR are: To support establishment of registries based on country priority To support information infrastructure To empower researchers, faculties, experts To Develop and collaborate with other universities and associations To transfer knowledge and plan for registration programs at the university To Increase collaboration with national disease registries and health outcomes Based on these objectives we started activities in the PoPR office. Activities performed in this period were: Establishing secretariat of RoPR in deputy of research, introducing members of PoPR committee, listing in-process registries programs in the university, developing PoPR databank, providing PoPR process, designing Memorandum of undrestanding, designing visiting tours for Medical informatics students, developing PoRP website. The future plan of PoPR is to collaborate with other organizations such as statistical and information office, deputy of treatment and deputy of health to enhance patient’s data infrastructure and educational programs.

21 11-13 December 2 0 1 8

Registry of Congenital Anomalies

Saeed Dastgiri1, Mohammad Heidarzadeh 2

1. Tabriz University of Medical Sciences 2. Ministry of Health

By control of infectious diseases and malnutrition in early ages, congenital anomalies are now proportionally of significant importance in perinatal mortality, childhood morbidity and disability in many of developed and developing countries. Epidemiology of birth defects in various parts of the world indicates different prevalence rates ranging from 2 to 10 percent of births in various places. There has however been no national report of the occurrence of congenital anomalies from any of Middle Eastern countries so far. In this paper, we report the nationwide prevalence of congenital anomalies in Iran. There has been no evidence-based data available on the occurrence of birth defects in Iran until 2000 when Tabriz Registry of Congenital Anomalies (TRoCA) was launched to investigate the epidemiology of congenital anomalies in the northwest region of the country. One of the main aims of TRoCA was to provide baseline information and framework (as a pilot programme) to set up a nationwide registry of birth defects in the country. As a result, the first national registry of congenital anomalies was then established in 2012 in Iran. The programme is called Epidemiology and Surveillance of Congenital Anomalies in Iran (ESCAI). Data collection, process, analysis, use and evaluation of the programme are based on the guidelines suggested by the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR), and European network of registries for congenital anomalies (EU- ROCAT). Congenital anomalies are defined based on the coding system of the Interna- tional Classification of Diseases (ICD) according to the primary diagnosis of anomaly. The overall prevalence rate of congenital anomalies has been estimated 3.3 per 100 births. Genitourinary tract and kidney anomalies, limb defects and anomalies of nervous system accounted proportionally for more than 50 percent of anomalies in the area. There has been a steady increase in the occurrence of congenital anomalies in the region over time. Total prevalence of anomalies is more than tripled between 2000 and 2017. During this period of time, the earlier records show that nervous system and genitourinary tract anomalies were the most frequent defects while later data indicated that heart and limb defects are the most common ones. As a national programme in a developing country, the condition of antenatal screening procedures, detection and ascertainment methods of defects, variable validity of the data and low power of the programme to find rare defects are of main limitations of the. Hence, target oriented training of professional staff involved in maternity/neonatal facilities may help to produce true estimates of birth defects.

22 رجیسرتی آرتریت روماتوئید احمدرضــا جمشــیدی۱، معصومــه اخلقــی کلهــرودی۱، مهــران پورنظــری۲، نوشــین احمــدزاده۱، لیــا نجاتبخــش صمیمــی۱، مهــدی محمودی ۱ 1. مرکز تحقیقات روماتولوژی، دانشگاه علوم پزشکی تهران 2. گروه داخلی، دانشگاه علوم پزشکی کرمانشاه

آرتریــت روماتوئیــد بیــاری التهابــی مزمنــی اســت کــه منجــر بــه تــورم، درد، خشــکی و محدودیــت حرکتــی مفاصــل شــده و بــه عنــوان یکــی از شــایعرتین بیــاری روماتیســمی و اتوایمیــون شــناخته میشــود. التهــاب ســینوویوم همــراه بــا تخریــب پیرشونــده غــروف، مفاصــل و اســتخوانها از یافتههــای مهــم پاتولوژیــک بیــاری محســوب میشــوند. در حالــی کــه علــت بیــاری آرتریــت روماتوئیــد مشــخص نیســت، ترکیبــی از عوامــل ژنتیکــی و محیطــی در ایجــاد ایــن بیــاری نقــش دارنــد. براســاس یافتههــای اپیدمیولوژیــک، شــیوع آرتریــت روماتوئیــد در جهــان 3-1 درصــد میباشــد، هرچنــد کــه شــیوع آن در کشــورها و نژادهــای مختلــف متفــاوت اســت. بـ�ر اسـ�اس دو مطالعـ�ه جمعیتـ�ی انجـ�ام شـ�ده در ایـ�ران، شـ�یوع بیـماری در مناطـ�ق شـ�هری و روسـ�تایی 3/0 درصــد میباشــد. از نظــر بالینــی معمــوالً آرتریــت روماتوئیــد مفاصــل کوچــک دســت و پــا را بــه صــورت قرینــه درگیــر مینمیــد، امــا در برخــی از مــوارد ممکــن اســت عــاوه بــر مفاصــل، ســایر ارگانهــا نظیــر ریــه، اعصــاب محیطــی، چشــم و پوســت را نیــز درگیــر منایــد. بــا توجــه بــه اینکــه ابتــا بــه ایــن بیــاری بــا ناتوانیهــای پیرشفتــه، عــوارض سیســتمیک، مــرگ زودرس و هزینههــای اجتمعی-اقتصــادی هم��راه اسـ�ت، بــر آن شــدیم تــا بــا راهانــدازی ســامانه رجیســرتی بیــاران مبتــا بــه آرتریــت روماتوئیــد بــه جمعــآوری و حفــظ متمرکــز دادههــا پرداختــه و گامــی موثــر در جهــت تشــخیص زود هنــگام و کنــرتل بیــاری برداریــم. بــه صــورت کلــی بخشــهای مختلــف ســامانه رجیســرتی بیــاری آرتریــت روماتوئیــد عبــارت اســت از: اطلعــات دموگرافیــک، تاریخچــه شــخصی و خانوادگــی، ســابقه پزشــکی فــرد، ســابقه جراحــی و تزریقــات کورتیکوســرتوئیدی، تاریخچــه درمــان دارویــی )گذشــته و حــال(، ارزیابیهــای بالینــی، درگیریهــای مفصلــی، دفورمیتیهــای اســکلتی، یافتههــای آزمایشــگاهی، معیــار تشــخیصی HAQ ،ACR، بخــش محاســبه DAS-28 ، ارزیابــی چشــمی بــرای داروهــای ضد-ماالریــا و در نهایــت ارزیابیهــای پاراکلینیــکال شــامل مــواردی نظیــر بررســی عکــس ایکــس ری، ســنجش تراک��م اس��تخوان، تستــ عملک�رـد تنفس��ی و سوــنوگرافی شـ�کم و لگنــ میباشــد. در ایــن ســامانه امــکان گزارشــگیری بــه صــورت فــردی و جمعــی وجــود دارد، همچنیــن گــزارش فــردی بــه صــورت فایــل PDF و گــزارش جمعــی بــه صــورت فایــل Excel در دســرتس کاربــران قــرار دارد. گزارشــهای فــردی بــرای اهــداف بالینــی و گزارشــهای جمعــی بــرای اهــداف پژوهشــی کاربــرد دارد. کلیدواژهها: رجیسرتی، آرتریت روماتوئید، یافتههای بالینی

برنامه ثبت ناهنجاریهای مادرزادی دکرت سعید دستگیری۱، دکرت محمد حیدرزاده۲ 1. دانشگاه علوم پزشکی تربیز 2. وزارت بهداشت

بــا کنــرتل بیمریهــای عفونــی و ســو تغذیــه در ســالهای گذشــته، نقایــص هنــگام تولــد مهمرتیــن علــت مــرگ ومیــر نــوزادان و علــت اصلــی ناتوانــی در کشــورهای توســعه یافتــه و تعــداد قابــل توجهــی از کشــورهای در حــال توســعه از جملــه ایــران بــوده اســت. تاکنــون در ایــران اطلعــات دقیقــی از وقــوع ناهنجــاری هــای نــوزادی وجــود نداشــته و از ایــرو لــزوم ارایــه مدلــی بــرای ثبــت، پیشــگیری و کنــ لرت ناهنجــاری هــای مــادرزادی رضورت دارد. بــا ایــن هــدف، برنامــه ثبــت بیــاری هــای مــادرزادی ابتــدا بــه صــورت یــک برنامــه منطقــه ای در شــال غــرب کشــور و بــر اســاس دســتورالعمل هــای ارائــه شــده توســط ســازمان بهداشــت جهانــی رشوع گردیــد. ایــن برنامــه بــا ایجــاد ارتبــاط هــای موثــر و عضویــت در ســازمان هــای بیــن املللــی کــه در ایــن زمینــه فعالیــت مــی کننــد توانســته اســت اســتاندارد هــای اجرایــی خــود را بــه نحــو مناســبی ارتقــا دهــد. پــس از چنــد ســال اجــرای منطقــه ای و تدویــن الگوهــای الزم بــرای برنامــه کشــوری، در حــال حــارض برنامــه پایــش ناهنجــاری هــای مــادرزادی بــه صــورت ملــی و در ســطح کشــوری توســط وزارت بهداشــت اجــرا مــی شــود.

23 11-13 December 2 0 1 8

بــر اســاس برنامــه ثبــت ناهنجاریهــای مــادرزادی كــه از ســال 1379 در شــال غــرب كشــور رشوع شــده و همچنــان ادامــه دارد، شــیوع كلــی ایــن اختــاالت برابــر بــا 3/3 در هــر صــد تولــد بــرآورد گردیــده اســت. یافتههــای ایــن برنامــه نشــان میدهــد كــه ناهنجاریهــای مربــوط بــه دســتگاه تناســلی، ادراری و كلیــه، ناهنجاریهــای سیســتم عصبــی و ناهنجاریهــای دســتها و پاهــا مجموعــاً حــدود پنجــاه درصــد از كل مــوارد را بــه خــود اختصــاص دادهانــد. باالتریــن میــزان شــیوع ناهنجاریهــای مــادرزادی مربــوط بــه ناهنجاریهــای سیســتم عصبــی بــا 39 در 10000 تولــد، و در مقابــل، شــیوع ناهنجاریهــای مــادرزادی عضلنــی ـ اســكلتی، كروموزومــی، چشــم و گــوش هــر كــدام كمــرت از 10 در هــر 10000 تولــد زنــده میباشــند. بررســی رونــد زمانــی وقــوع ناهنجاریهــای مــادرزادی در فاصلــه زمانــی بیــن ســالهای 1379 تــا 1396 نشــان میدهــد كــه میــزان وقــوع ایــن ناهنجاریهــا در ایــن فاصلــه زمانــی بیــش از ســه برابــر افزایــش پیــدا كــرده اســت. در بررســی علــل مربــوط بــه ایــن افزایــش قابــل توجــه در فاصلــه زمانــی ســالهای مطالعــه، ضمــن اینكــه تاثیــر احتملــی عوامــل اتیولوژیــك را نبایــد از نظــر دور داشــت، راه انــدازی سیســتم ثبــت و گــزارش دهــی بهــرت در ســالهای اخیــر نســبت بــه ســالهای اولیــه نیــز میتوانــد موثــر بــوده باشــد. برآوردهــای حاصــل از بررســیهای جمعیــت عمومــی کشــور نیــز نشــان میدهــد كــه وقــوع بیمریهــای مــادرزادی در هفــت درصــد از تولدهــا در ایــران اتفــاق میافتــد و ناهنجاریهــای مربــوط بــه دســتگاه تناســلی، ادراری و كلیــه، قلبــی، سیســتم عصبــی و ناهنجاریهــای دســتها و پاهــا بیشــرتین مــوارد وقــوع را بــه خــود اختصــاص میدهنــد. از ایــرو و بــا توجــه بــه اینكــه در حــال حــارض در كشــور مــا در هــر ســال در حــدود یــك میلیــون و پانصــد هــزار تولــد وجــود دارد، بــرآورد مــی شــود کــه ســاالنه بیــش از یكصــد هــزار مــورد ناهنجــاری بــا منشــا مــادرزادی بــه جمعیــت كشــور اضافــه میشــود. البتــه در حــال حــارض و در بــدو تولــد همــه ایــن مــوارد تشــخیص داده منــی شــوند و بررســیهای میدانــی نشــان داده اســت كــه تشــخیص ایــن بیمریهــا در محــدوده شــهرهای بــزرگ دانشــگاهی فقــط در چهــل درصــد انجــام میگیــرد و در محــدوده مناطقــی كــه امكانــات تشــخیصی كمــرتی وجــود دارد حتــی تــا نــود درصــد نیــز تشــخیص داده منــی شــوند. الزم بــه ذکــر اســت کــه در برنامــه کشــوری فعــا خطاهــای تکنیکــی قابــل توجهــی وجــود دارد کــه طبیعتــا بعنــوان بخشــی از برنامــه هــای رضوری آتــی و بــه عنــوان یکــی از فرآینــد هــای اجتنــاب ناپذیــر در هــر سیســتم پایــش، مــی بایــد اعتبــار یابــی هــای الزم بــرای برطــرف کــردن خطاهــای مزبــور انجــام گیــرد.

سامانه ثبت بیمریهای روماتیسمی RHEUMATRY مهدی محمودی۱، محمد تنهایی2،۱، نوشین احمدزاده۱، احمدرضا جمشیدی۱ 1. مرکز تحقیقات روماتولوژی، دانشگاه علوم پزشکی تهران 2. گروه مهندسی کامپیوتر، دانشکده فنی و مهندسی، دانشگاه ایلم

بیمریهــای روماتیســی باعــث درگیــری ارگانهــای مختلــف بــدن شــده و بــا افزایــش موربیدیتــی و مورتالیتــی و کاهــش کیفیــت زندگــی بیــاران همــراه میباشــند. در واقــع ایــن بیمریهــا عــاوه بــر تظاهــرات بالینــی متعــدد، عــوارض روحــی، روانــی، اجتمعــی، اقتصــادی، مشــک تل عاطفــی و در نهایــت ناتوانــی در انجــام کارهــای روزمــره را نیــز بــه دنبــال دارنــد و لــذا بــار مــادی و معنــوی باالیــی بــرای افــراد بیــار و نیــز جامعــه ایجــاد میکننــد. از ایــن منظــر برنامــه ثبــت بیمریهــای روماتیســمی میتوانــد بــه صــورت آیندهنگــر، در کاهــش بــار مــادی و معنــوی ایــن بیمریهــا یاریگــر باشــد و اهــداف پژوهشــی فراوانــی را تحــت پوشــش قــرار دهــد. هــدف اصلــی برنامــه ثبــت بیمریهــای روماتولــوژی )RHEUMATRY(، ایجــاد یــک بانک جامع ملــی و معتــرب از اطلعات بالینــی، دموگرافی و محیطــی از بیــاران مبتــا بــه بیمریهــای روماتیســمی میباشــد. بــا کمــک ایــن بانــک اطلعاتــی میتــوان: ۱- میــزان شــیوع بیمریهــای روماتیســمی در جامعــه را تعییــن کــرد، ۲- میــزان شــیوع تظاهــرات بالینــی متفــاوت ایــن بیمریهــا را تعییــن کــرده و نیــز ارتبــاط آنهــا را بــا متغیرهــای متعــددی از جملــه ســن، جنــس، نــژاد و ... ۳- تاثیــر عوامــل محیطــی )نظیــر عفونتهــای گوارشــی، تناســلی و ادراری( و نیــز ســابقه ی خانوادگــی را بــر بــروز تظاهــرات بالینــی متفــاوت بیمریهــا بررســی کــرد، ۴- تاثیــر درمانهــای رایــج بــر کاهــش پیامدهــای ناشــی از بیمریهــای روماتیســمی )موربیدیتــی و مورتالیتــی( و یــا بهبــود کیفیــت زندگــی بیــاران را بررســی کــرد، ۵- تاثیــر فعالیتهــای فیزیکــی و انــواع ورزشــها را بــر کاهــش پیامدهــای ناشــی از بیمریهــای روماتیســمی )موربیدیتــی و مورتالیتــی( و یــا بهبود کیفیت زندگــی بیمران بررســی کرد، ۶- میــزان شــیوع نابــاروی و ســقط در بیــاران را تعییــن کــرده و همچنیــن تاثیــر فعالیــت و شــدت بیــاری، مــدت زمــان ابتــا بــه بیــاری و داروهــای مــرف شــده را بــر میــزان شــیوع نابــاروی، ســقط و متایــل بــه بــاروری در بیــاران مبتــا بررســی کــرد. ایــن برنامــه ثبــت یــک پــروژه ملــی بــر پایــه وب در مــورد ثبــت اطلعــات بالینــی و دموگرافــی بیمران روماتیســمی میباشــد کــه در قالب یک نــرم افــزار آنلیــن بــا رضیــب امنیــت بــاال طراحــی شــده اســت. بــرای جمعــآوری اطلعــات جمعیتشــناختی و بالینــی از پرسشــنامه های

24 معتــرب جهانــی و بــر اســاس نظــر متخصصیــن روماتولــوژی بــرای هــر کــدام از بیم ریهــا اســتفاده میشــود و ایــن پرسشــنامهها در ســامانه در دســرتس کاربــران قــرار گرفتهانــد. هــر کاربــر بعــد از ثبــت قــرارداد و بــا دریافــت نــام کاربــری و رمــز عبــور میتوانــد اطلعــات مربــوط بــه بیــاران خــود را در ایــن برنامــه ثبــت کنــد. اطلعــات بیــاران بــه صــورت محرمانــه در ایــن برنامــه نگهــداری میشــود و بــه جــز افــراد مربوطــه و مســئول، کســی بــه ایــن اطلعــات دسرتســی نــدارد. بــا توجــه بــه ملــی بــودن ایــن برنامــه ثبــت، کاربــران مختلفــی در ســطح کشــور در حــال اســتفاده از ایــن ســامانه هســتند. امیــد اســت کــه بــا جمعــآوری اطلعــات مختلــف بیــاران روماتیســمی در ســطح کشــور، رشایــط مســاعدتری بــرای بررســی و مقایســه تاثیــر عوامــل محیطــی و ژنتیکــی بــر روی پیامدهــای ایــن نــوع بیمریهــا فراهــم شــود. امیــد اســت ایــن برنامــه ثبــت تخمیــن دقیقــرت و واقعیــرتی از ویژگیهــای بیمریهــای روماتیســمی، تاثیــر و عــوارض داروهــا بــر رونــد بیــاری در کشــور، فراهــم آورده و بــرای دســتیابی بــه اهــداف پژوهشــی، درمانــی و آموزشــی بهداشــت و درمــان در ســطح کشــوری مفیــد واقــع شــود. یکــی از ویژگیهــای مهــم RHEUMATRY اســتفاده از ایــن برنامــه در کلینیــک میباشــد بــه صورت گرافیکال میباشــد. امید اســت در آینده نزدیــک بتوانــد جایگزیــن پرونده هــای کاغــذی در درمانگاههــای خصوصــی و دولتــی بشــود. کلید واژهها: ثبت بیمریها، بیم ریهای روماتیسمی، روماتری

ثبت بیمری ام اس ایران، کنرتل کیفیت و مدیریت اطلعات و خدمات بیمران رشاره اسکندریه1، عبدالرضا نارص مقدسی1، نازنین رزازیان2، سید محمد باغبانیان3، فرشته اشرتی4،اصغر بیاتی5، مهدیه مخرب دزفولی1، محمد علی صحرائیان1* 1. مرکز تحقیقات ام اس، پژوهشکده علوم اعصاب، دانشگاه علوم پزشکی تهران، تهران، ایران 2. دانشیارنورولوژی، گروه نورولوژی ، دانشگاه علوم پزشکی کرمانشاه، کرمانشاه، ایران 3. Clinical Neurology, Bualicina Hospital, Neurology Department, Mazandaran University of Medical Sciences 4. Isfahan neurosciences research center, Department of Neurology, Isfahan University of Medical Sciences 5. Department of neurology, Shahre Kord University of Medical Sciences, Shahre Kord, Iran مقدمه: جهــت اســتفاده از برنامــه ثبــت بیــاری ام اس در سیاســتگزاری حــوزه ســامت، بایــد فراینــد ثبــت از کیفیــت خوبــی برخــوردار باشــدتا بتــوان بــه کیفیــت داده هــا و نایــج حاصلــه اعتــاد کــرد. فراینــد ثبــت ام اس شــامل طراحــی برنامــه و پرسشــنامه، شناســایی بیــار، ورود اطلعــات در نــرم افــزار، اصــاح داده هــا و تکرارگیــری، ارســال داده هــا و تجزیــه و تحلیــل و گــزارش دهــی و آرشــیو اطلعــات اســت. هدف: ارتقای کیفیت خدمات مراقبتی به بیمران مبتل به ام اس از طریق توسعه و ارتقای کیفیت ثبت است. روش: بــرای جمــع آوری کنــرتل کیفیــت و مدیریــت اطلعــات ثبــت ام اس ازپرسشــنامه اســتاندارد شــده و نــرم افــزار DHIS2 اســتفاده شــده اســت کــه اعتبارســنجی و ارائــه داده هــای آمــاری جمعــی و مبتنــی بــر بیــاری را امــکان پذیــر مــی ســازد. ایــن نــرم افــزار یــک نــرم افــزار عمومــی مبتنــی بــر وب بــا مــدل بــاز اســت کــه بــه کاربــر اجــازه مــی دهــد محتویــات یــک سیســتم اطالعــات خــاص را بــدون نیــاز بــه برنامــه نویســی طراحــی کنــد. نتیجه: 1- رائــه یــک راه حــل جامــع مدیریــت داده بــر اســاس اصــول ذخیــره ســازی داده هــا و تجزیــه و تحلیــل در ســطوح مختلــف و پشــتیبانی 2 - سفارشــی ســازی و ســازگاری منطقــه ای از طریــق رابــط کاربــری 3- بــزار ورود داده صــورت لیســتهای اســتاندارد یــا جــداول. 4- ارائــه ابزارهــای مختلــف بــرای اعتبــار ســنجی داده هــا و بهبــود کیفیــت آنهــا. بحث: محورهــای مهــم کنــرتل کیفیــت ثبــت ام اس شــامل کیفیــت فرایندهــای ثبــت، کیفیــت داده هــا و نتایــج ثبــت و شــاخص هــای انــدازه گیــری در کنــرتل کیفیــت ثبــت مــی باشــد.

25 11-13 December 2 0 1 8

References 1- Swedish Health Care, Improved Results in Healthcare Using Quality Registries. http://www.swedishhealthcare. 2- A need for national registries and international collaborative research in multiple sclerosis. Myhr KM, Grytten N, Torkildsen Ø, Wergeland S, Bø L, Pugliatti M. Acta Neurol Scand 2012: 126 3- Dreyer NA, Schneeweiss S, McNeil BJ, et al. GRACE principles: recognizing high-quality observational studies of comparative effectiveness. Am J Manag Care. 2010 Jun;16(6):467-71. 4 -L. Emilsson, B. Lindahl, M. K€oster, M. Lambe J. F. Ludvigsson. Review of 103 Swedish Healthcare Quality Registries. Journal of Internal Medicine. 2015, 277; 94–136.

برنامه های ثبت بیمری ها و پیامدهای سلمت معاونت تحقیقات و فناوری محبوبه اسلمی دانشگاه علوم پزشکی مازندران

دانشــگاه علــوم پزشــکی مازنــدران در ســال 1394 بــا تشــکیل کارگــروه ثبــت بیــاری هــا و پیامدهــای ســامت بــا مشــارکت معاونیــن محــرتم تحقیقــات و فنــاوری، بهداشــت، درمــان ، توســعه و هئیــت علمــی هــای علقــه منــد و فعــال دانشــگاه، فعالیــت خــود را در حــوزه ثبــت بیــاری هــا بــا موضوعــات اولویــت دار ســامت اســتان از جملــه رسطــان و دیابــت آغــاز منــود. هــم اکنــون کارگــروه در ســومین ســال فعالیــت خــود موفــق بــه راه انــدازی و همــکاری در 21 برنامــه ی ثبــت بیــاری هــا و پیامدهــای ســامت شــده اســت. چهــار برنامــه بــا گســرته ی ملــی، یــک برنامــه اســتانی، نــه برنامــه ثبــت دانشــگاهی و دو ثبــت بیمرســتانی راه انــدازی و در پنــج برنامــه ملــی بــا دانشــگاه هــای علــوم پزشــکی دیگــر همــکاری مــی کنــد. برنامــه ثبــت ملــی تاالســمی از ســال 1395 رشوع بــه ثبــت بیــاران در اســتان منــوده و هــم اکنــون بــا ثبــت نزدیــک بــه 2000 رکــورد از بیــاران مازنــدران و انعقــاد تفاهــم نامــه بــا دانشــگاه هــای علــوم پزشــکی قزویــن و ایرانشــهر بــه فعالیــت خــود ادامــه مــی دهــد. ثبــت بیــاری اکتســابی قلبــی، تــب روماتیســمی کــودکان و لوفومونیازیــس از دیگــر ثبــت هــای ملــی دانشــگاه علــوم پزشــکی مازنــدران مــی باشــند. برنامــه هــای ثبــت ضایعــات پیــش بدخیــم و بدخیــم دهانــی، دیابــت )کــودکان، بزرگســاالن و بــارداری(، پرفشــاری خــون، رسطــان پســتان، ترومــا بــه مغــز در دانشــگاه در حــال فعالیــت مــی باشــند و ثبــت اســتئوپروز، اعتیــاد، ترومــا، ســندروم فیربومیالژیــا و اختــاالت روانپزشــکی در حــال راه انــدازی هســتند. همچنیــن دانشــگاه علــوم پزشــکی مازنــدران در برنامــه هــای ثبــت ملــی HLA ، IBD ، ســلیاک ، رسطــان وکیســت هیداتیــد بــا دانشــگاه های علــوم پزشــکی کشــور همــکاری مــی کنــد. بســرت الزم و حمیــت هــای همــه جانبــه در معاونــت تحقیقــات و فنــاوری دانشــگاه جهــت راه انــدازی برنامــه هــای ثبــت فراهــم مــی باشــد و پــس از طــرح موضــوع توســط علقــه منــدان، طــرح تحقیقاتــی کارشناســی شــده و اعتبــارات الزم تخصیــص داده مــی شــود. همچنیــن نــرم افــزار برنامــه هــای ثبــت بــه ســفارش مجریــان برنامــه هــا طراحــی و در اختیــار قــرار مــی گیرنــد. نــرم افــزار تحــت وب بــوده و بــا تخصیــص نــام کاربــری بــه کاربــران، ثبــت داده هــا بــه صــورت آنلیــن انجــام مــی پذیــرد. امیــد اســت بــا داده هــای حاصــل از برنامــه هــای ثبــت مطالعــات پژوهشــی موثــری صــورت پذیــرد تــا گام موثــری در جهــت ارتقــای کیفیــت ســامت جامعــه برداشــته شــود.

26 رشایط موفقیت یک برنامه رجیسرتی و معرفی برنامه ثبت بیمری های نقص ایمنی در ایران اصغر آقامحمدی مرکز تحقیقات نقصی ایمنی دانشگاه علوم پزشکی تهران

بــرای شــناخت بیشــرت از هــر بیــاری یــا یــک گــروه بیمری هــا و اطــاع از شــیوع آن بیــاری وشــناخت عــوارض ان بیــاری هــا دسرتســی بــه حچــم قابــل توجــه آن بیــاری و ثبــت اطلعــات مبتلیــان در قالــب برنامــه ثبــت بیــاری رضوری اســت. بدیهــی اســت ثبــت بیــاری هــا رصفــا پژوهــش محســوب منیشــود . لــذا رضورت برنامــه ثبــت بیــاری هــای مختلــف توســط مرکــز تحقیقــات مرتیــط بــا موضــوع رجیســرتی راه انــدازی گــردد تــا بــا اســتفاده از اطلعــات بیــاران ثبــت شــده بتوانــد تحقیقــات بالینــی و پایــه در چهــت پاســخ گویــی بــه ســواالت مطــرح شــده انجــام دهــد. زمانی یک رجیسرتی میتواند نتایج موثر و مفیدی داشت باشد که رشایط زیر فرام گردد. 1- رجیسرتی توسط یک مرکز تحقیقات راه اندازی گردد 2- عــاوه بــر ثبــت اطلعــات بالینــی بیــاران ، اطلعــات ژنتیکی بیــاران شــامل Cell line و یا DNA بیــاران در بیوبانک آزمایشــگاه تخصصــی مرکــز تحقیقــات نگهــداری شــود 3- برنامــه ثبــت بیــاران در ســطج ملــی انجــام گــردد و بــرای تحقــق ایــن هــدف ، بــا راه انــدازی شــبکه کشــوری آن بیــاری و مشــارکت متامــی متخصصیــن در گیــر بــا بیــاری را ، مــی تــوان متامــی بیــاران شــناخته شــده در رسارس کشــور را ثبــت منــود 4- داشــن ارتبــاط بیــن املللــی بــا دانشــگاه هــا و مــرا کــز تحقیاتــی خــارج از کشــور بــا زمینــه تحقیقاتــی مشــابه بــا موضــوع رجیســرتی . بدیهــی بــا امــاده شــده زیــر ســاخت هــای )مــوارد ذکــر شــده در فــوق ( و دسرتســی بــه حجــم قابــل توجــه بیــاران ثبــت شــده ، رشایــط همــکاری بــا مراکــز تحقیقاتــی خــارج کشــور تســهیل میگــردد. برنامــه ثیــت بیــاری هــای نقــص ایمنــی در ســال 1378 در دانشــگاه علــوم پزشــکی تهــران را انــدازی شــده . بــا توجــه بــه رضورت وجــود مرکــز تحقیقــات مرتبــط بــا موضــوع رجیســرتی مرکــز تحقیقــات نقــص ایمنــی در ســال 1389 تاســیس گردیــد . مبنظــور گســرتش دامنــه ثبــت بیــاری هــا، شــبکه کشــوری نقــص ایمنــی در ســال 1396 را انــدازی گردیــد . در برنامــه ثبــت بیــاری هــای نقــص ایمنــی ،عــاوه بــر جمــع آوری اطلعــات بالینــی بیــاران ، Cell line تهیــه شــده از لنفوســیت هــای B بیــار )بــا کمــک انیســتیتو پاســتور ( و DNA اســتخراج شــده در بیــو بانــک مرکــز نگهــداری میشــود. بــا فراهــم شــدن زیــر ســاخت هــای الزم مرکــز تحقیقــات نقــص بــا اســتفاده از داده هــای رجیســرتی بــا دانشــگاه هــای مختلــف ماننــد هــاروارد در بوســتون ، انیســتیتو راکفلــز در نیویــورک ، کارولینســکا در ســوئد و دانشــگاه برشــیا در ایتالیــا همــکاری پژوهشــی دارد تا کنون 668 مقاله در ژورنال های معترب در زمینه ایمونولوژی بالینی با 9229 ارجاع وh-index:45 منترش شده است.

27 11-13 December 2 0 1 8

The process of setting up a disease registration system in Kermanshah University of Medical Sciences farid najafi1, masoumeh abasi2, yazdan rezaei3 1. Kermanshah University of Medical Sciences Email:[email protected] 2. Kermanshah University of Medical Sciences Email: [email protected] 3. Kermanshah University of Medical Sciences Email:[email protected]

Abstract: ثبــت بیــاری، یــک سیســتم ســازماندهی شــده اســت کــه بــا هــدف یــا اهــداف تعییــن شــده و بــا اســتفاده از روشــهای مطالعــات مشــاهده ای بــه جمــع آوری داده هــای بیــاران مــی پــردازد.راه انــدازی نظــام ثبــت بیــاری موفــق نیازمنــد وجــود فراینــدی مشــخص جهــت پیــاده ســازی آن مــی باشــد. بــه همیــن منظــور یــک فرآینــد در دانشــگاه علــوم پزشــکی کرمانشــاه تهیــه و تصویــب گردیــد. بــرای ایجــاد ایــن فرآینــد، ابتــدا کارگروهــی ویــژه بــرای بررســی رشایــط اختصاصــی دانشــگاه و بیمرســتانهای آموزشــی و همچنیــن شناســایی توامنندیهــای بالقــوه در ایــن راســتا تشــکیل گردید.ایــن کارگــروه بــا دعــوت از ریاســت دانشــگاه، معاونــت تحقیقــات، معاونــت درمــان، روســای بیمرســتانهای آموزشــی و همچنیــن مســئول IT و دو نفــر عضــو هیــات علمــی از رشــته هــای انفورماتیــک پزشــکی و مدیریــت اطلعــات ســامت تشــکیل و پــس از بررســی جامــع و همفکــری در ایــن خصــوص، فرآینــد مــورد نظــر تهیــه و ســپس در جلســه شــورای پژوهشــی و شــورای دانشــگاه بــه عنــوان یــک سیاســت کلــی مطــرح و بــه تصویــب رســید. در ایــن فراینــد، فــرم طــرح عنــوان ثبــت بیــاری توســط عضــو هیــات علمــی تکمیــل و پــس از تاییــد توســط مدیــر گــروه و بیمرســتان مربوطــه بــه واحــد ثبــت بیــاری هــای دانشــگاه ارســال مــی گــردد، عنــوان ثبــت دریافتــی بــه منظــور بررســی موضــوع و امــکان پذیــری پیــاده ســازی بــه شــورای پژوهشــی دانشــکده مربوطــه ارســال مــی گــردد. در صــورت تاییــد، عنــوان در جلســه کارگــروه ثبــت بیــاری هــای دانشــگاه مطــرح و پــس از تاییدکارگــروه، در قالــب یــک نامــه رســمی حــاوی فرصــت یــک ماهــه تهیــه پروپــوزال و معرفــی یــک تیــم متشــکل از تخصــص هــای اپیدمیولــوژی، مدیریــت اطلعــات ســامت، انفورماتیــک پزشــکی و یــک دانشــجو جهــت کمــک در کلیــه مراحــل پیــاده ســازی ثبــت بــه مســئول ثبــت اطــاع داده مــی شــود. واژههای كليدی: نظام ثبت بیمری، فرآیند، کارگروه ثبت بیمری ها

Multiple sclerosis registration in Kermanshah and challenges nazanin razazian1, farid najafi2, dariush afshari3, soraya siabani4 1. Kermanshah University of Medical Sciences Email:[email protected] 2. Kermanshah University of Medical Sciences Email:[email protected] 3. Kermanshah University of Medical Sciences Email:[email protected] 4. Kermanshah University of Medical Sciences Email:[email protected]

Abstract: مقدمــه: رونــد رو بــه رشــد ثبــت بیمریهــا در طــی ســالهای اخیــر در ایــران نشــانه ای از رویکــرد سیاســتگزاران سیســتم بهداشــتی مبنــی بــر نگــرش مبتنــی بــر آمــار و مســتندات اســت. دانشــگاه علــوم پزشــکی کرمانشــاه بــا رشکــت فعــال در ایــن برنامــه چنــد بیــاری از جملــه ثبــت بیــاری ام اس را آغــاز کــرده اســت. روش اجــرا : هــدف نهایــی طــرح ثبــت کلیــه بیــاران مبتــا بــه ام اس در ســطح اســتان کرمانشــاه بــوده اســت.فاز اول طــرح بــا ثبــت ســیصد بیــار ام اس تعریــف شــد. پرسشــنامه ای شــامل اطلعــات دموگرافیــک و اطلعــات مربــوط بــه بیــاری تهیــه گردیــد. روایــی پرسشــنامه توســط شــش همــکار نورولوژیســت مــورد تاییــد قــرار گرفــت. جمــع آوری اطلعــات در بیمرســتان امــام رضــا، درمانــگاه بیمرســتان و مطبهــای خصوصــی رشوع شــد. اطلعــات شــامل زمــان رشوع بیــاری، علمــت اولیــه ، تعــداد عــود هــا ، نــوع داروی مصفــی و میــزان ناتوانــی بــر اســاس EDSS بــوده اســت. نتایــج: از ابتــدای ســال نــود و هفــت، صــد و نــود و هفــت بیــار در ایــن مطالعــه وارد شــده انــد. کــه شــامل ســی و ســه مــرد و صــد و شــصت و چهــار زن بودند.ســن متوســط بیــاران 8/35ســال اســت. در ایــن بررســی دسرتســی بــه بیمرانــی کــه بــه بیمرســتان مراجعــه مــی کننــد آســانرت از درمانــگاه یــا مطبهــای خصوصــی بــوده اســت. نظــارت بــر پــر کــردن پرسشــنامه کامــارضوری اســت و ارزیابــی ناتوانــی بیــار بــر اســاس معیــار EDSS نیــاز بــه معاینــه تخصصــی توســط نورولوژیســت دارد. ایــن معاینــه زمــان بــر و پــر هزینــه اســت ولــی از دقــت باالیــیبرخــوردار اســت. نتیجــه گیــری: در رشایــط ویزیــت رسپایــی بیــاران زمــان کافــی بــرای ارزیابــی EDSS وجــود نــدارد. لــذا در طــرح در درجــه اول از وجــود کســانی کــه علقــه بیشــرتی بــه همــکاری داشــته انــد اســتفاده شــد و در یــک برنامــه بازآمــوزی ام اس بــه رفــع ابهامــات در ارزیابــی ایــن معیــار و آمــوزش بیشــرت آن پرداختــه شــد. از ســوی دیگــر در جمعیــت بیــاران ام اس گروهــی رشکــت فعالــرتی در همــه مداخــات پژوهشــی دارنــد ولــی گــروه بزرگــ یرت نیــز متایلــی بــه ثبــت بیــاری خــود و حتــی اظهــار آن بــه دیگــران ندارنــد. بــه نظــر مــی رســد برگــزاری همیــش بیــاران و دادن آگاهــی بیشــرت بــه آنــان مــی توانــد میــزان همــکاری را بیشــرت کنــد. انجمــن ام اس در کرمانشــاه از حمیــت کافــی برخــوردار نیســت و اکــر فعالیتهــای آن توســط خــود بیــاران صــورت مــی گیــرد ایــن امــر بــه محــدود کــردن دسرتســی بــه بیــاران دامــن زده اســت. ثبــت 28 بیــاری و اطــاع از رشایــط بیــاران مــی توانــد بــه ثبــات انجمــن نیــز کمــک بیشــرتی کنــد. واژههای كليدی: ثبت بیمری، مولتیپل اسکلروزیس، چالش ها

Designing a Minimum data set for venous diseases registry: A literature review

Masoumeh sarbaz1*, Mohammad Mahdi Kamyar2, MohammadHadi Saeed Modaghegh3, Khalil Kimiafar1, Sahar Nabati4, Fereshte Manouchehri Monazah4, Shadi Hoseini Toosi4 1. Assistant Professor, Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran 2. Assistant Professor, Vascular and Endovascular Surgery Research Center, Alavi Hospital, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran 3. Professor of Vascular Surgery, Vascular and endovascular surgery research Center, Alavi Hospital, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran 4. Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran *Corresponding Author: [email protected]

Introduction: With the increasing trend of venous diseases (varicose veins, chronic venous insufficiency, and deep vein thrombosis), the registry of these diseases provides valuable information for patients’ venous care, Also, it will defined standard criteria for diagnosis and severity of this diseases. Effective decisions about health care are dependent on access to reliable and valuable data. The minimum data set is recommended as a standard tool used during the data collection process to ensure that the decision makers have access to a consistent dataset. Therefore, the aim of the present study was to design a minimum data set for venous diseases registry. Methods:A literature review was performed in 2018 through a search the database such as PubMed, Science Direct and Google Scholar with the keywords “Minimum data set”, “Venous disease registry”, “Varicose veins registry”, “common data element “, “Deep vein thrombosis” and “DVT Registry”. Finally, 54 citations (27 articles and 27 forms) were obtained that were examined by researchers. Results: The findings of this study showed that according to the studies carried out and registries designed in other countries, the information items for the design of the venous diseases registry were in two categories related to deep vein thrombosis (DVT) and chronic venous diseases. Data elements extracted for deep vein thrombosis include 18 categories: 1.Demographic information 2. Communication information 3. Baseline Characteristics 4. Insurance information 5. Personal and financial information 6. Past Medical history and risk factors 7. Social History 8. Medications 9. Signs and symptoms 10. Anatomic region 11. Tests 12. Thrombus Age 13. Diagnostic Procedures 14. Therapeutic Procedures 15. Treatment Phases 16. Treatments and disease complications. 17. Alternative Diagnosis 18. Follow up information. Chronic venous diseases include 21 categories: 1.Demographic information 2. Communication information 3. Baseline Characteristics 4. Insur- ance information 5. Financial and personal information 6. Past Medical history and risk factors 7. Social History 8. Family history 9. Signs and symptoms 10. Etiologic classification 11. Anatomic classification 12. Pathophysiologic classification 13. Diagnostic Procedures 14. Therapeutic Proce- dures 15. Intravenous treatments Variables 16. Treatments and diseases complications 17. Medi- cations 18. Allergies 19. Anatomic region 20. Type of Anesthesia 21. Follow up information. 29 11-13 December 2 0 1 8

Conclusion: In this study, data elements have been extracted from the studies and forms of the venous diseases registry in other countries. These data elements will be used to establish venous diseases registry. As the registry is used to improve the quality of care, reduce costs, improve patient safety, and evaluate new therapies and techniques, its information can facilitate timely follow up of patients with venous diseases. Keywords: Registry, Minimum Data set, Venous Diseases, Deep vein Thrombosis

Acute Stroke Registry Planning experiences

Azimeh Danesh shahraki1, reza safdari2, mojdeh ghabaee3, leila shahmoradi4, jaleh shoshtarian malak5 1. Tehran University of Medical Sciences, Tehran, Iran (email:[email protected])09133816321 2. Tehran University of Medical Sciences, Tehran, Iran (email:[email protected])09133816321- Corresponding author 3. Tehran University of Medical Sciences, Tehran, Iran (email:[email protected])09133816321- Corresponding author 4. Tehran University of Medical Sciences, Tehran, Iran (email:[email protected])09133816321 5. Tehran University of Medical Sciences, Tehran, Iran (email:[email protected])09133816321

Abstract: Background: Stroke is a serious health threat around the world, particularly in developing countries. As a preventive action, disease registries are used in developed countries for a long time. Based on the globally accepted evidence, disease registries have an impressive positive impact on different dimensions of healthcare systems. In order to develop an acute stroke registry, acute stroke registry planning experiences in the world are assessed in this paper. Method: There are four main factors in the planning phase (determination of goal, scope, registration type; and, consideration of technical aspects) to be assessed. Different electronic databases were examined to find relevant articles. Twenty-seven English articles focusing on acute stroke registry development were finally found for the study. Based on the literature review, the main datasets and care quality measures of acute stroke registries were identified. Results: The main purposes of developing acute stroke registry are improvement of care quality, epidemiology assessment, and evaluation of healthcare system outcome. Most of the registries focus on improving care quality. The number of multi-center, web-based, and prospective registries were significantly higher than other types of registry. Only one of the registry systems implemented clinical support tools. Among twelve datasets identified to be considered as registry, seven datasets were highly used. Among the fourteen care quality measures in acute ischemic stroke, the mostly used measure was the rate of early thrombolytic therapy. Conclusion: As observed in this research, time is a very important factor in care quality improvement- particularly in stroke acute phase for achievement of a more qualified care. Establishment of a web-based, prospective registry system for stroke acute phase with a clinical guideline-based support tool for diagnosis of patients’ eligibility for thrombolytic treatment seems useful for monitoring the rate of early thrombolytic therapy. Keywords: Acute Stroke Registry planning, stroke care quality registries, registry development, registry establishment, acute stroke care quality surveillance.

30 Data elements identification of Acute Stroke Quality Registry with Guideline based Diagnosis Capability

Azimeh Danesh shahraki1, Reza safdari2, Mojdeh Ghabaee3, Leila Shahmoradi4, Jale Shoshtarian malak5 1. Tehran University of Medical Sciences, Tehran, Iran (email:[email protected]) 2. Tehran University of Medical Sciences, Tehran, Iran (email:rsafdari@ tums.ac.ir)- Corresponding author 3. Tehran University of Medical Sciences, Tehran, Iran (email: [email protected])- Corresponding author 4. Tehran University of Medical Sciences, Tehran, Iran (email: [email protected]) 5. Tehran University of Medical Sciences, Tehran, Iran (email: [email protected])

Abstract: Introduction: Stroke is one of the most important health problems all over the world. Care quality improvement in acute phase is significantly influential on stroke prognosis. An acute stroke quality registry that is integrated with a guideline-based support tool is a powerful system for measuring and improving care quality. As the first step in registry system design, the present study tries to identify relative data elements. Methods: A list of Common Data Elements (CDEs) – taken from the National Institute of Neurological Disorders and Stroke (NINDS)– and a list of data elements for paper-based medical records were first evaluated, and then compared with each other. In parallel, a literature review was conducted to explore the main data elements in acute stroke registries. Considering quality improvement as the main purpose, a second study was undertaken to identify the measures of acute stroke care quality. For guideline-based smart diagnosis of patients’ eligibility for thrombolytic treatment (as a clinical support tool), clinical guidelines of American Heart Association (AHA) were assessed, and appropriate eligibility criteria were identified. Finally, a questionnaire was prepared based on the identified data elements. The questionnaire was distributed among 17 neurology physicians for identification of essential data elements (Minimum Datasets). Results: Patient-centric data elements were identified and classified into three categories (including data elements identified based on acute stroke care quality measures; data elements for diagnosis of patients’ eligibility for Tissue Plasminogen Activator (tPA) treatment based on clinical guidelines; and, essential data elements based on paper medical records). After duplication removal, three categories of data elements were integrated. Finally, essential data elements were identified by use of neurology clinical experts’ survey. Conclusion: Compared to traditional disease registries, quality improvement registries cover much more detail data elements. Integration of medical record data elements with care quality measures as well as guideline-based criteria results in a powerful source of data for more exact studies and analysis by clinical support tools. Identifying essential data elements- as a mandatory part of the system- helps more accurate data entry, and can be considered as a ready to use item for other relative systems too. Keywords: stroke registries, care quality measures, registry data elements, electronic medical record, emergency care quality.

Approaches and Requirements for Designing Disease Registry Systems: A Review of Selected Studies of the Agency for Health Care Research and Quality (AHRQ)

Hamid Bouraghi1, Ali Mohammadpour2, Marziyeh Khalednouri3 1. Health Information Management, Department of Health Information Technology, School of Paramedicine, Hamadan University of Medical Sciences, Hamadan, Iran. 2. Health Information Management, Department of Health Information Technology, School of Paramedicine,

31 Articles 11-13 December 2 0 1 8

Hamadan University of Medical Sciences, Hamadan, Iran. 3. Medical Records Specialist, Department of Health Information Management, Fatemiyeh Hospital, Hamadan University of Medical Sciences, Hamadan, Iran.

Abstract: Introduction: The disease registry program generally includes a list of patients with a specific and usually chronic disease that is performed to control and improve the care. Considering the fact that creating disease registry systems require diverse approach and, on the other hand, the practical use of these systems requires their proper design; therefore, the present study deals with these two important issues in the development of disease registry systems. Methods: This article is a review article. In this study, with the reference to the American Agency for Health Care Research and Quality (AHRQ) website and searching for the term “disease registry systems”, the selected studies of the center on the subject was gathered included twelve studies. Then, the selected studies were reviewed and summarized according to the purpose of the study. Results: A review of selected studies by AHRQ showed that we can use of simple approaches (including the use of EXCEL software) to complex approaches (including the use of databases derived from national health information exchange programs) in establishing a disease registry systems. Patient- centeredness and information dimension are among the most important requirements for designing these systems. Conclusion: Since all health information technology projects are not successfully launched and implemented, therefore, it is essential that providers and healthcare organizations, before investing in disease registry systems, fully evaluate the existing approaches of disease registry systems as well as the capabilities of these systems. Key words: Registration Systems, Disease, Disease Registry, Agency for Health Care Research and Quality Corresponding Author Address: Dr. Ali Mohammadpour, Department of Health Information Technology, Hamadan University of Medical Sciences, Shahid Fahmideh Blvd, Hamadan, Iran.Mobile number: 9127085669 . E-mail: [email protected]

Quality registry of recurrence and complications of brucellosis in Hamadan, Iran

Dr. Maryam Adabi1, Dr. Fariba Keramat1, Dr. Manoochehr Karami2 1. Brucellosis Research Center, Hamadan University of Medical Sciences, Hamadan, Iran 2. Research Center for Health Sciences, Hamadan University of Medical Sciences, Hamadan, Iran

Background: Brucellosis is a common bacterial disease between humans and animals that is transmitted through direct or indirect human contact with contaminated animals or contaminated dairy products. Brucellosis is endemic in Iran with higher level of incidence at western areas include Hamadan. Hamadan province has an approximately incidence of 80% per 100,000 people and brucellosis has increased in nomadic and rural populations of province during last years. The effective strategies for treating patients and also control and prevent the complications and recurrence of brucellosis in the affected population, in rural and urban areas of Hamadan province is considered as the health priorities in the region. Also since brucellosis could

32 be a chronic disease and recurrence could occurs, it needs to be recorded in the same way as other chronic diseases such as cancer. To achieve the mentioned aims, for the first time this registration system was established to recording the recurrence and complications of brucellosis in west of Iran. Description: Approved by the ministry of health, During four years, started from 2017, all eligible patients who referred to referral centres in Hamadan will enter the brucellosis recurrence and complications registry program based on the definition of recurrence and complications of brucellosis which done by qualified specialist focal points after receiving written consent. After confirmation the disease, a questionnaire including demographic sections, signs and symptoms of the disease, complications of brucellosis and the results of paraclinical tests was completed for the patient, and referral experts will collect the questionnaires monthly and send to the registration center. The questionnaires will be retrieved again by the expert of entering the registration data and after eliminating faults and ensuring that the questionnaire is completed accurately; the registration data will be entered into the software for recording recurrence and complications. The data of this study will be used by descriptive statistics indexes including tables and charts as well as the frequency and percentage of reports. Conclusions: The Hamadan brucellosis registry, with an expanded registry network with other related centres in Iran especially neighbour province in west of country, could be reporting, and expected to continue generating significant information on multiple aspects of brucellosis complications and recurrence, its trajectory, management and patient outcomes. In addition, one of the main motivations of this registration system is providing a platform for other studies to respond the knowledge gap existing in prognosis of the complications and recurrence of the disease. Keywords: Hamadan, brucellosis, registry, recurrence, complications

Establishment of biobank of Famenin Brucellosis Cohort, Hamadan, Iran

Background: Human biobanks are collection of biological samples and health information from a large number of participants generally in the cohort studies. Famenin brucellosis cohort with long-term follow-up with a large number of participants is the first prospective cohort study about brucellosis in Iran. Since Hamadan province is a very high incidence region of brucellosis in Iran, it is necessary to know about the brucellosis colonization patterns in communities to implementation of preventive activities. This cohort designed to investigate clinical and sub-clinical forms of brucella infection in the selected population. Consequently we aimed to storage biospecimens of participants including whole blood, red blood cells (RBC), buffy coat, plasma, serum, DNA and RNA that derived from blood in human biobanks in different phases of study to future organization of biomedical research for upgrading the knowledge of brucellosis in Iran. Description: At the first phase of study, during September to December 2016, after classification of urban and rural areas and regarding the incidence of the disease in Famenin (a city in Hamadan as pilot) clusters selected systematically from each category. Finally, 3363 persons were considered and a full questionnaire including demographic data, occupation, history of fever or brucellosis and other important related data were gathered for each one. At the next, blood sampling for further analysis and completion brucellosis examination were done. Of the 3363 individuals, our biobank now contains over 2433 serum samples which were collected. 67.8% from rural areas and 32.2% from urban areas; which of them 44.8% were male and 55.2% were female. To optimum qualities

33 11-13 December 2 0 1 8 of biological samples in long time storage for future assays, all samples gathering in different phases will stored systematically at -85˚C at ultra-freezers in brucellosis cohort biobank in Hamadan. During periodic sampling from participants, the biobank allows unique experiments to be performed. The collection is ideal for studies that: a) Measure dynamic change from healthy to disease onset, B) Assess biomarkers across a population, C) Include confounding diseases, E) Address biomarker changes over time within healthy and patients individuals. Conclusions: Famenin cohort of brucellosis is a big public cohort study approximately demonstrative of the Hamadan province’s population. This study delivers us a wide range of information about different aspects of brucellosis spread, allowing examination of many research questions. In addition, one of the main motivations of this cohort study is providing a complete biobank to have platform for other studies to respond to the knowledge gap existing about brucellosis. Participants will be followed up for 4 next years to examine clinical profiles of brucellosis and complete investigation to reach strategies to control and reduce human and animal brucellosis. At the present our data collection are not free to access but we welcome to any considered collaborations: for any collaboration be in contact with. ([email protected]) Keywords: Hamadan, brucellosis, cohort, biobank, bio-samples

Quality registry of recurrence and complications of brucellosis in Hamedan, Iran

Dr. Maryam Adabi1, Dr. Fariba Keramat2, Dr. Manoochehr Karami3 1. Brucellosis Research Center, Hamadan University of Medical Sciences, Hamadan, Ira 2. Research Center for Health Sciences, Hamadan University of Medical Sciences, Hamadan, Iran 3. Brucellosis Research Center, Hamadan University of Medical Sciences, Hamadan, Iran

Abstract: Background: Brucellosis is a common bacterial disease between humans and animals that is transmitted through direct or indirect human contact with contaminated animals or contaminated dairy products. Brucellosis is endemic in Iran with higher level of incidence at western areas include Hamadan. Hamadan province has an approximately incidence of 80% per 100,000 people and brucellosis has increased in nomadic and rural populations of province during last years. The effective strategies for treating patients and also control and prevent the complications and recurrence of brucellosis in the affected population, in rural and urban areas of Hamedan province is considered as the health priorities in the region. Also since brucellosis could be a chronic disease and recurrence could occurs, it needs to be recorded in the same way as other chronic diseases such as cancer. To achieve the mentioned aims, for the first time this registration system was established to recording the recurrence and complications of brucellosis in west of Iran. Description: Approved by the ministry of health, During four years, started from 2017, all eligible patients who referred to referral centers in Hamadan will enter the brucellosis recurrence and complications registry program based on the definition of recurrence and complications of brucellosis which done by qualified specialist focal points after receiving written consent. After confirmation the disease, a questionnaire including demographic sections, signs and symptoms of the disease, complications of brucellosis and the results of paraclinical tests was completed for the patient, and referral experts will collect the questionnaires monthly and send to the registration center. The questionnaires will be retrieved again by the expert of entering the registration data and after eliminating faults and ensuring that the questionnaire is completed accurately, the registration data will be entered into the software for recording recurrence and complications. The data of this study will be used by descriptive statistics indexes including tables and charts as well as the frequency and percentage of reports. Conclusions: The Hamadan brucellosis registry, with an expanded registry network with other related centers in Iran especially

34 neighbor province in west of country, could be reporting, and expected to continue generating significant information on multiple aspects of brucellosis complications and recurrence, its trajectory, management and patient outcomes. In addition, one of the main motivations of this registration system is providing a platform for other studies to respond the knowledge gap existing in prognosis of the complications and recurrence of the disease. Keywords: Hamadan, brucellosis, registry, recurrence, complications

Iran Pituitary Tumor Registry: Description of the Program and Initial Results nahid hashemi madani1, mohammad ebrahim khamseh2, mojtaba malek3, Mohammad Reza Mohajeri Tehrani4, Hamideh akbari5, Mohammad ghorbani6 1- Endocrine Research Center, Institute of Endocrinology and Metabolism, Iran University of Medical Sciences (IUMS) 2- Endocrine Research Center, Institute of Endocrinology and Metabolism, Iran University of Medical Sciences (IUMS) 3- Endocrine Research Center, Institute of Endocrinology and Metabolism, Iran University of Medical Sciences (IUMS) 4- Endocrinology and Metabolism Research Center, Endocrinology and Metabolism Clinical Sciences Institute, Tehran University of Medical Sciences (TUMS), Tehran, Iran. 5- Endocrine Research Center, Institute of Endocrinology and Metabolism, Iran University of Medical Sciences (IUMS) 6- Department of Neurosurgery and Neuro-Intervention, Firoozgar hospital, Iran University of Medical Sciences (IUMS), Tehran, Iran.

Abstract: Objective: This study designed to present initial results on clinical presentation, therapeutic modalities, and outcome information of patients with pituitary tumors registered in Iran Pituitary Tumor Registry (IPTR). Methods: Data from a web-based electronic medical records of patients with various pituitary tumors referred to four tertiary care centers in the country were collected. Retrospective analysis of demographic, clinical, and therapeutic information of 298 patients including 51 clinically nonfunctioning adenoma (CNFA), 85 acromegaly, 135 prolactinoma, and 27 cushing disease (CD) were performed. Results: From October 2014 to July 2016, 298 people with the diagnosis of pituitary tumor were registered. Prolactinoma was the most prevalent tumor (45.3%), followed by Acromegaly (28.6%), CNFPA (17.1%), and CD (9%). Female dominance was seen among patients with prolactinoma and CD, while the majority of patients with CNFPA were male and acromegaly was equally distributed between men and women. Hypogonadal symptoms were almost always seen in all types of pituitary groups. Surgery alone was the most common therapeutic modality used in cases of acromegaly, CNFPA, and CD. However, medical therapy alone was frequently applied for cases of prolactinoma. Finally biochemical cure has been achieved in the most cases of prolactinoma and CD, but only in 36.5% of acromegalics. Moreover, 80% of patients suffered from CNFPA showed no residual tumor in their imaging. Conclusion: In conclusion, this comprehensive tumor registry enables early identification, selection of best therapeutic approaches, as well as evaluation of long-term treatment outcomes. Furthermore, this registry can be used to improve surveillance protocols. Keywords: Pituitary Tumor, Registry, Pituitary adenoma

35 11-13 December 2 0 1 8

MS registry system and its impact on patients care and health outcome

Sharareh Eskandarieh1, Abdorreza Naser Moghadasi2, Mahdieh Mokhber Dezfoli3, Mohammad Ali Sahraian4 1- MS research center, Neuroscience institute, Tehran University of medical sciences, Tehran, Iran 2- MS research center, Neuroscience institute, Tehran University of medical sciences, Tehran, Iran 3- MS research center, Neuroscience institute, Tehran University of medical sciences, Tehran, Iran 4- MS research center, Neuroscience institute, Tehran University of medical sciences, Tehran, Iran

Abstract: زمینه/هــدف: سیســتم ثبــت بیــاری هــا، یــک سیســتم ســازماندهی شــده اســت کــه از روش هــای مطالعــه مشــاهده ای بــرای جمــع آوری داده هــای یکنواخــت و بــه منظــور ارزیابــی نتایــج خــاص بــرای یــک جمعیــت یــا یــک بیــاری، وضعیــت یــا رشایــط مواجهــه خــاص تعریــف شــده کــه اهــداف علمــی، بالینــی و سیاســی را محقــق مــی ســازد بهــره مــی گیــرد )1(. هــدف از ایــن پژوهــش ایجــاد راهنــا بــرای برنامــه ریــزی و گســرتش ثبــت بیــاری ام اس اســت. روش اجــرا: زمانــی کــه بــرای یــک سیســتم ثبــت برنامــه ریــزی مــی کنیــد، پیــروی از ایــن مراحــل اولیــه توصیــه مــی شــود. )3،4( 1- تعییــن هــدف2 - شناســایی ذینفعــان کلیــدی 3- امــکان ســنجی 4- تشــکیل کارگــروه ثبت بیــاری 5- طراحــی برنامــه 6- تعیین حوزه ی ثبــت بیــاری 7- تعییــن جمعیــت هــدف 8- تعییــن پروتــکل ثبــت بیــاری 9 - جمــع آوری داده هــا 10 - ذخیــره ســازی 11- کنــرتل کیفیــت 12 - اســتخراج 13 - گــزارش نتایــج نتایــج : نتایجــی کــه از راه انــدازی ایــن سیســتم حاصــل خواهــد شــد بــه رشح زیــر اســت: چگونگــی تاثیــردوره ی طبیعــی بیــاری و موقعیــت جغرافیایــی بــر بیــار, چگونگــی تاثیــر پیرشفــت بیــاری بــا درمــان هــای موجــود آیــا تفاوتــی در مراقبــت بیــار وجــود دارد؟ چــه فرآیندهایــی بــرای پیگیــری کیفیــت مراقبــت بایــد ترکیــب شــوند؟ آیــا برنامــه هــای مداخلــه ای، موفــق بــوده اســت؟ بهــره بــرداری ذینفــان کلیــدی بــه صــورت مســتقیم و غیــر مســتفیم . ارتقــاء ارائــه خدمــات درمانــی و آموزشــی بــه بیــاران و گــروه هــاي هــدف ثبــت. دســتیابی بــه مهارتهــای تخصصــی در زمینــه ایجــاد و مدیریــت پــروژه و ایجــاد بســرت مناســب جهــت توســعه کمــی و کیفــی تحقیقــات و گســرتش شــبکه همــکاری جمــع بنــدی: ثبــت ملــی بیــاری ام اس، ثبــت جمعیتــی در مرحلــه پایلــوت اســت کــه مبتنــی بــر شــبکه نورولوژیســت هــای بالینــی و پژوهشــگران حــوزه ســامت اســت. ایــن سیســتم یــک منبــع قــوی بــرای ارتقــا کیفیــت مراقبــت هــای بالینــی و ایجــاد بســرتی مناســب جهــت توســعه کمــی و کیفــی تحقیقــات مربــوط بــه بیــاری ام اس اســت. واژههای كليدی: ام اس، سیستم ثبت، مراقبت، پیامد سلمت

Research Protocol: Designing and Establishment of the First Inherited Retinal Dystrophy Registry in Iran

Hamideh Sabbaghi1, Hamid Ahmadieh2, Narsis Daftarian3, Fatemeh Suri4, Abbas Sheikh Taheri5, Farid Khorrami6, Sina Madani7

1. Ophthalmic Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran- [email protected] 2. Ophthalmic Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran- [email protected] 3. Ophthalmic Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran- [email protected] 4. Ophthalmic Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran- [email protected] 5. Iran University of Medical Sciences, Tehran, Iran- [email protected] 6. Iran University of Medical Sciences, Tehran, Iran- [email protected] 7. Anderson Cancer Center, University of Texas, USA- [email protected]

36 Abstract: Purpose: To describe the protocol and the first report of the national Inherited Retinal Dystrophy Registry (IRDR) establishment in Iran. Methods: This study is a community- based participatory research that was approved by the Ministry of Health of Iran in 2016. To provide the minimum data set (MDS), several focus group meetings were held with participation of the faculty members of the ophthalmology department and the epidemiology and biostatistics units of the Ophthalmic Research Center affiliated to Shahid Beheshti University of Medical Sciences (SBMU). Thereafter, the final MDS was presented to the software engineering team to develop a web-based software. In the pilot phase, software was set up in two referral centers including Labbafinejad Medical Center (Tehran) and Alzahra Eye Hospital (Zahedan) to identify the probable drawbacks of project implementation. Afterwards, the national collaborative phase was started at 10 eye research centers in different provinces. Currently, patient recruitment is actively performed and a unique identifier has been automatically assigned to each patient to avoid any duplication in data entry. All data including demographic, hereditary, ocular and systemic conditions as well as visual and ophthalmic examinations are registered. Final diagnosis is made based on both clinical manifestations as well as genetic findings and recorded based on the International Classification of Diseases (ICD-11), Corrosion Under Insulation (CUI), Online Mendelian Inheritance in Man (OMIM) and Systematized Nomenclature of Medicine-Clinical Terms (SNOMED-CT). The steering committee meetings are held each year with the presence of delegates of all centers. Results: Data have been entered into the web-based software by trained technicians throughout the country since February 2016. Up to now, a total of 1000 patients with the diagnosis of IRD have been registered by the participants, including Ophthalmic Research Centers of SBMU, Gilan, Zahedan, Mashhad and Yazd Eye Centers. About half of the registered patients had a diagnosis of retinitis pigmentosa (RP), followed by cone-rod dystrophy (13.3%), Leber s congenital amaurosis (LCA; 10.2%) and Usher syndrome (7.4%). etc. Definite diagnosis was confirmed by genetic testing in 10% of the registered patients. Conclusion: Our study as a proof of concept model of the first IRD registry showing successful web-based software design and data collection. These data will help the researchers to have deep understanding of the distribution and genetic patterns of this complicated retinal disease in Iran for future prophylactic and therapeutic strategies. Keywords: National Registry, Protocol, Inherited Retinal Dystrophy, Iran

Systematic Review of Migraine Disease Registries

Misagh Zahir Esfahani1,4, Maryam Ahmadi2, Mohammad Heydari3,4,*

1. PhD Student of Health Information Management, Iran University of Medical Sciences, Tehran, Iran 2. Health Information Management Department, Iran University of Medical Sciences, Tehran, Iran 3. Master Student of Health Information Technology, Iran University of Medical Sciences, Tehran, Iran 4. Student Research Committee, School of Health Management and Information Sciences Branch, Iran University of Medical Sciences, Tehran, Iran. * Address for correspondence: Mohammad heydari, Email: [email protected]

Introduction: Migraine is one of the primary causes of chronic headaches and classified as the seven cause of disability in the world, which is accompanied with almost the entire duration of a person’s life. Diseases’ registry system is an organized program for collecting, storing, retrieving and analyzing individual information and diseases that can determine the impact of health care, health care costs and improve the health of patients. The purpose of this study is to identify migraine registry system and their data elements. Methods: The search strategy was carried out using two categories of keywords related to the registry 37 11-13 December 2 0 1 8 system in the first group and the keywords related to migraine and headache in the second group, without time limitation in the advanced search section of the PubMed, Scopus and Embase databases. As well as in the hand search of the Migraine registries we searched different countries and related websites. Identification systems in the field of this disease and their data elements were proposed to implement a migraine disease registry system. In this review, the qualitative content analysis method was used. Results: In this study, 3 articles from 197 retrieved articles (PubMed =18 Embase= 31and Scopus = 123) were included in the study. Also, 3 related websites were reviewed. Therefore, a total of 6 registry systems were investigated and all types of data elements were extracted. In terms of purpose, the main purpose of these registry systems were research and, in terms of the type of registry systems, were more voluntary based registries. The most important data elements were the characteristics of the patients, the causes of migraine, types of migraine headaches, and various types of treatments. The International Classification of Headache Disorders (ICHD) and the Classification of Chronic Migraine (CM) were used to collect and maintain data quality. Conclusion: The results of this study showed that generally, there are very few registry systems in the field of migraine disease. A registry system for migraine disease leads to improvements in treatment and better understanding of the causes of this disease. This study could be used as a base for the data elements required for migraine disease registry system. Also it is suggested to develop and implement a migraine disease registry system in Iran. Key Words: migraine, registry, headache, data elements

Designing the minimum data set for toxic registry based on the International Classification of Diseases (ICD-10)

Khalil Kimiafar1, Bita Dadpour2, Masoumeh Sarbaz3, Fereshteh Manouchehri Monazah4, Alireza Banaye Yazdipour5 1. Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected] 2. Medical Toxicology Research Center, Mashhad University of Medical Sciences, Mashhad, Iran- dadpourb@ mums.ac.ir 3. Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected] 4. Students Research Committee, Mashhad University of Medical Sciences, Mashhad, Iran 5- Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected] 5. Students Research Committee, Mashhad University of Medical Sciences, Mashhad, Iran 5- Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected]

Abstract: مقدمــه: مســمومیت هــا در متامــی جوامــع از عمــده تریــن مشــکلت بهداشــتی بــه شــار مــی رونــد و یکــی از شــایع تریــن علــل مراجعــه بیــاران بــه اورژانــس هــا، می¬باشــند. متاســفانه بــه دلیــل عــدم وجــود سیســتم اطلعاتــی جامــع و کامــل کــه داده هــای مســمومیت را بتــوان ثبــت کــرد، آمــار صحیــح و کاملــی کــه رونــد مســمومیت هــا را نشــان دهــد، وجــود نــدارد. لــذا، هــدف پژوهــش حــارض، طراحــی مجموعــه حداقــل داده هــای رجیســ یرت مســمومیت هــا مبتنــی بــر سیســتم طبقــه بنــدی بیــن املللــی بیمریهــا و مشــکلت ســامت بــه عنــوان زیــر ســاخت رجیســرتی مســمومیت هــا در ســطح کشــور بــود. روش بررســی: ایــن مطالعــه از نــوع کاربــردی بــود کــه در ســال 1397 انجــام شــد. در ابتــدا فــرم هــای مســمومیت موجــود در کشــورهای توســعه یافتــه کــه رجیســرتی 38 مســمومیت هــا را پیــاده ســازی کــرده انــد و همچنیــن، فــرم هــای موجــود در ایــران و مقــاالت مرتبــط مــورد مطالعــه قــرار گرفــت. ویرایــش دهــم سیســتم طبقــه بنــدی بیــن املللــی بیمریهــا بــه طــور خــاص بــه مبحــث مســمومیت هــا، مــاده مســمومیت و علــت مســمومیت پرداختــه اســت کــه اساســی بــرای تکمیــل مجموعــه داده هــای حداقــل در ایــن مطالعــه قــرار گرفــت. یافتــه هــا: در مجمــوع پــس از انجــام جســتجوهای مکــرر، 5 فــرم ثبــت اطلعــات بیــار از وب ســایت هــای مربــوط بــه رجیســرتی مســمومیت هــا و 27 مقالــه مرتبــط پیــدا شــد و عنــارص اطلعاتــی رضوری بــرای اختصــاص کامــل تریــن و بــا کیفیــت تریــن کــد مســمومیت براســاس سیســتم طبقــه بنــدی بیــن املللــی مشــخص گردیــد. پــس از بررســی، متامــی عنــارص اطلعاتــی موجــود در فــرم هــای رجیســ یرت مســمومیت و مقــاالت مرتبــط، اســتخراج و چــک لیســتی شــامل مجموعــه حداقــل داده هــا، بــه منظــور دســته بنــدی عنــارص اطلعاتــی طراحــی شــد. در نهایــت عنــارص اطلعاتــی بــه 7 دســته کلــی شــامل اطلعــات دموگرافیــک، اطلعــات مربــوط بــه ســابقه ی قبلــی بیــاری، اطلعــات مراجعــه، اطلعــات مواجهــه، اطلعــات بالینــی، اطلعــات درمانــی و ســایر اطلعــات، تقســیم بنــدی شــد. نتیجــه گیــری: بــه طــور کلــی، بکارگیــری رجیســرتی هــا کــه داده هــای باکیفیــت را جمــع آوری مــی کننــد و بــر اســاس اســتانداردها و سیســتم هــای طبقــه بنــدی بین-املللــی طراحــی شــده انــد، مــی تواننــد بــرای اهــداف برنامــه ریــزی، پژوهشــی و درمــان، مــورد اســتفاده قــرار گیرنــد و بررســی داده هــای رجیســرتی مــی توانــد، بــه سیاســت گــزاران و مدیــران در جهــت اتخــاذ تصمیــات بــه موقــع و صحیــح و تدویــن دســتوالعمل هایــی در جهــت ارتقــا ســطح ســامت جامعــه و افزایــش کیفیــت زندگــی افــراد، کمــک کننــده باشــد. واژههــای كليــدی: کلیــدواژه هــا: رجیســ یرت مســمومیت هــا، مجموعــه حداقــل داده هــا، سیســتم طبقــه بنــدی بیــن املللــی بیــاری هــا

Designing Polycystic ovary syndrome registry system

Farideh Moramezi1, Mahvash Zargar2, Roshan Nikbakht3, Mojgan Barati4, Masoud Hemadi5, Javad Zarei6

1. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran([email protected])‎ 2. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran([email protected])‎ 3. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran([email protected])‎ 4. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran ‎ 5. Associate Professor, Embryologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, [email protected])‎ 6. Assistant Professor, Health Information Management, Department of Health Information Technology,‎ Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran ‎* Corresponding author: Associate Professor, PhD of Health ‎Information Management, Ahvaz ‎Jundishapur University of Tel: +989163230481 ‏)‏[email protected]‏(‏ Medical Sciences, Ahvaz, Iran

Introduction: Polycystic ovary syndrome (PCOS) is one of the most common problems of women in reproductive age, in addition to menstrual problems, which can lead to infertility, acne, hirsutism, and the risk of respiratory, cardiac, metabolic diseases, thyroid dysfunction, diabetes Type II and even cancer of the uterus can be increased in the patients. In PCOS, identifying patients, studying the long-term complications of the disease, and survey the effectiveness of therapeutic intervention and outcomes of care are of great importance. Therefore, the establishment of the PCOS disease registration system provides an appropriate opportunity to determine the prevalence of the disease, the risk factors for it,

39 11-13 December 2 0 1 8 and the study of the complications of the disease, monitoring the effect of the onset of treatment on the progression of the disease and various therapeutic methods and their outcome. Methods: This is an applied study conducted in 2018. First, a PCOS registry dataset was developed based on a review of the studies on the minimum data set of diseases and views of experts. Then, using the Expert panel method, the necessary data for this dataset was determined. In the second phase, using the healthcare information systems’ software comparisons (such as Electronic Medical Records) and interviewing the experts, the minimum capabilities of the PCOS registration software were extracted and the conceptual model was designed. The third phase, using the Experts panel method was determined the comprehensive protocol for the implementation of the PCOS registry system. Finding: In the first step, the minimum data set of PCOS registry system were determined in two general categories administrative data (including demographic, socioeconomic, patient admission/ referral, healthcare provider, and data from the person responsible to registering the information) and clinical data (including personal and past medical history, chief complaint and history of present illness, diagnostic data, comorbidities and complication related to PCOS, patient care plan, diagnostic and therapeutic intervention, disease progress and response to care, follow-up data and outcome of care). The minimum features of the PCOS registry software are proposed in four main sections, including the ability to receive and store data, search information, displaying and reporting information and managing the system. To design the conceptual model of the software, after compiling the system scenarios, unified modeling language(UML) diagrams were developed using Visual paradigm software (version 8). The comprehensive protocol of the PCOS registry system included the method of case finding, inclusion and exclusion criteria, time period of registry, how to record patient data, the quality control of the data, and follow-up of patients. Conclusions: The proposed framework in this study can help various Universities of Medical Sciences to implement the PCOS registry system. Keywords: Polycystic ovary syndrome, Disease registry, Software design

Designing Polycystic ovary syndrome registry system Farideh Moramezi1, Mahvash Zargar2, Roshan Nikbakht3, Mojgan Barati4, Masoud Hemadi5, Javad Zarei6 1. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran ‎ 2. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran ‎ 3. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran ‎ 4. Associate Professor, Gynecologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran ‎ 5. Associate Professor, Embryologist, Fertility and Infertility Research Center, Ahvaz Imam Khomeini‎ Hospital, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran ‎ 6. Assistant Professor, Health Information Management, Deptartment of Health Information Technology,Ahvaz‎ Jundishapur University of Medical Sciences, Ahvaz, Iran‎

Abstract: مقدمــه: ســندرم تخمــدان پلــی کیســتیک یکــی از مشــکلت شــایع زنــان در ســن بــاروری اســت کــه میتوانــد عــاوه بــر مشــکلت قاعدگــی، آکنــه، هیرسوتیســم، منجــر بــه نازایــی شــده و ریســک ابتــا بــه، مشــک تل تنفســی، قلبــی، ســندرم متابولیــک، اختــاالت 40 غــده تیروئیــد، دیابــت نــوع دو و حتــی رسطــان رحــم، را در افــراد مبتــا افزایــش دهــد. در ارتبــاط بــا PCOS شناســایی افــراد مبتــا، بررســی عــوارض درازمــدت بیــاری، و مطالعــه بــر روی اثربخشــی روشهــای درمانــی و پیامــد حاصــل از درمــان از اهمیــت باالیــی برخــوردار اســت. لــذا راهانــدازی نظــام ثبــت بیــاری PCOS ، امــکان مناســبی بــرای تعییــن شــیوع بیــاری، عوامــل زمینــهای مؤثــر در بــروز بیــاری، بررســی عــوارض ناشــی از بیــاری، بررســی تأثیــر زمــان رشوع درمــان و روشهــای درمانــی مختلــف و پیامــد حاصــل از درمــان را فراهــم میکنــد. روش بررســی: پژوهــش حــارض یــک مطالعــه کاربــردی اســت کــه در ســالهای 97-96 انجامشــده اســت. در مرحلــه اول، مجموعــه دادههــای نظــام ثبــت PCOS¬، بــر اســاس مطالعــه منابــع پزشــکی، مطالعــات داخلــی انجامشــده در ارتبــاط بــا مجموعــه حداقــل دادههــا، و نظــرات افــراد متخصــص تهیــه گردیــد. ســپس بــا اســتفاده از روش جلســه هماندیشــی خــربگان)Expert Panel( دادههــای رضوری ایــن مجموعــه داده تعییــن شــد. در مرحلــه دوم بــا اســتفاده از بررســی نرمافزارهــای مرتبــط بــا مــدارک پزشــکی الکرتونیکــی بیــار، و مصاحبــه بــا خــربگان حداقــل قابلیتهــای نرمافــزار ثبــت PCOS¬، اســتخراج و مــدل مفهومــی نرمافــزار برنامــه ثبــت طراحــی شــد. مرحلــه ســوم، بــا اســتفاده از روش جلســه هماندیشــی خــربگان پروتــکل جامــع بــرای اجــرای برنامــه ثبــت تعییــن گردیــد. یافتــه هــا: در مرحلــه اول، مجموعــه حداقــل داده هــای برنامــه ثبــت PCOS، در دو کلس کلــی داده هــای اداری ) شــامل داده هــای هویتــی، اقتصــادی- اجتمعــی، داده هــای پذیرش/مراجعــه بیــار، داده هــای فــرد/ محــل ارائــه دهنــده خدمــات و داده هــای فــرد ثبــت کننــده اطلعــات( و داده هــای بالینــی )شــامل تاریخچــه پزشــکی فــردی – خانوادگــی مرتبــط بــا PCOS، تاریخچــه بیــاری فعلــی و شــکایات بیــار، داده هــای تشــخیص، عــوارض و بیــاری هــای همــراه، اقدامــات تشــخیصی و درمانــی، ســیر بیــاری و پاســخ بــه درمــان، داده هــای پیگیــری، و پیامــد درمــان( تعییــن گردیدنــد. حداقــل قابلیــت هــای نــرم افــزار ثبــت در چهــار بخــش کلــی، قابلیــت هــای دریافــت و ذخیــره داده هــا، قابلیــت هــای جســتجوي اطلعــات، قابلیــت هــای گــزارش گیــری و منایــش اطلعــات و قابلیــت هــای مدیریــت سیســتم بــود. بــرای طراحــی مــدل مفهومــی نــرم افــزار، بعــد از تدویــن ســناریوهای سیســتم بــا اســتفاده از زبــان مدلســازی یکپارچــه و در نرمافــزار ویــژوال پارادایــم ) نســخه 8( منودارهــای مــدل مفهومــی ترســیم گردیــد. پروتــکل جامــع برنامــه ثبــت، شــامل نحــوه بیمریابــی، مــدت زمــان اجــرای برنامــه ثبــت، نحــوه تشــکیل پرونــده، ثبــت اطلعــات، کنــرتل کیفــی داده هــا، پیگیــری درمــان و نحــوه خــروج بیــاران از برنامــه ثبــت بــود. نتیجهگیری:چارچــوپ پیشــنهادی در مطالعــه حــارض مــی توانــد بــه دانشــگاه هــای مختلــف در پیــاده ســازی نظــام ثبــت PCOS کمــک کنــد. واژههای كليدی: سندرم تخمدان پلی سیستیک، ثبت بیمری ها، طراحی نرم افزار

A conceptual model for comprehensive software of diseases and health outcomes registries Javad Zarei1, Maria Cheraghi2, Ali Valinejadi3, Behzad Sobhani4, Maryam Asgarnejad5 1. Assistant Professor, PhD of Health Information‎ Management, Ahvaz Jundishapur‎ University of Medical Sciences, Ahvaz, Iran 2. Associate Professor ‎of Health Science, Department of Public Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. ([email protected]) 3. Assistant Professor, PhD of Health Information‎ Management,‎ Department of Health Information, Technology, School of Allied Medical Sciences, Semnan ‎University of MedicalSciences, Semnan, Iran.‏(‏‎ali. [email protected]‏)‏ 4. MSc of Computer Engineering, Office of Statistics and Information Technology Management, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran 5. BA of Medical Record, Emam Sajad Hospital, Mazandaran University of Medical Sciences, Ramsar, Iran

هــر برنامــه ثبــت یــک نرمافــزار تهیــه کننــد کــه عــاوه بــر تحمیــل هزینههــای بــاال، امــکان نظــارت دانشــگاه بــر برنامــه ثبــت را بــا دشــواری همــراه میســازد. ســوم عــدم اســتفاده از سیســتمهای کدگــذاری اســتاندارد بــرای محتــوای دادههــا، ســبب میشــود کــه ایــن نرمافزارهــای ثبــت قــادر بــه تبــادل اطلعــات بــا ســایر نرمافزارهــای مورداســتفاده در مراکــز مراقبــت ســامت نباشــند. هــدف از ایــن مطالعــه ارائــه مــدل مفهومــی بــرای نرمافــزار جامــع ثبــت بیمریهــا و پیامدهــای ســامت بهمنظــور حــل مشــکلت بیانشــده بــود.

Abstract: مقدمــه: نرمافــزار ثبــت، یکــی از زیرســاختهای اصلــی در متامــی برنامههــای ثبــت بیــاری و پیامدهــای ســامت اســت. امــا اســتفاده از نرمافزارهــای ثبــت بیمریهــا، در ایــران بــا مشــکلت متعــددی همــراه اســت. نخســت در ایــران اســتاندارد یــا راهنــای مشــخصی بــرای طراحــی یــا خریــد یــک نرمافــزار ثبــت بیــاری وجــود نــدارد. دوم، دانشــگاهها مجبورنــد کــه بــرای هــر برنامــه ثبــت یــک نرمافــزار تهیــه کننــد کــه عــاوه بــر تحمیــل هزینههــای بــاال، امــکان نظــارت دانشــگاه بــر برنامــه ثبــت را بــا دشــواری همــراه میســازد. ســوم عــدم اســتفاده از سیســتمهای کدگــذاری اســتاندارد بــرای محتــوای دادههــا، ســبب میشــود کــه ایــن نرمافزارهــای ثبــت قــادر بــه تبــادل اطلعــات بــا ســایر نرمافزارهــای مورداســتفاده در مراکــز مراقبــت ســامت نباشــند. هــدف از ایــن مطالعــه ارائــه مــدل مفهومــی بــرای نرمافــزار جامــع ثبــت بیمریهــا و پیامدهــای ســامت بهمنظــور حــل مشــکلت بیانشــده بــود. روش بررســی: پژوهــش حــارض یــک مطالعــه کاربــردی اســت کــه در ســال 97 انجامشــده اســت. نخســت بــر اســاس مطالعــات انجامشــده در ارتبــاط بــا مجموعــه حداقــل دادههــا و ثبــت بیمریهــا، بررســی مجموعــه حداقــل دادههــای ســامت در کشــورهای منتخــب، مســتندات وزارت بهداشــت در ارتبــاط بــا پــروژه ســپاس) ســامانه پرونــده الکرتونیــک ســامت ایرانیــان(، و بررســی نرمافزارهــای مرتبــط بــا مــدارک پزشــکی الکرتونیکــی بیــار، مجموعــه دادههــای نرمافــزار جامــع ثبــت بیم ریهــا و پیامدهــای ســامت، پیشــنهاد گردیــد. در مرحلــه بعــد بــا اســتفاده از مصاحبــه نیــم ســاختاریافته بــا افــراد کارشــناس و بررســی مســتندات مرتبــط بــا ســاختار و معــاری پرونــده الکرتونیــک ســامت، حداقــل قابلیتهــای نرمافــزار جامــع ثبــت بیمریهــا و پیامدهــای ســامت، تعییــن گردیــد. در نهایــت مــدل مفهومــی، نرمافــزار جامــع ثبــت بیمریهــا و پیامدهــای ســامت، طراحــی گردیــد. یافتههــا: مجموعــه دادههــای نرمافــزار جامــع ثبــت بیمریهــا و پیامدهــای ســامت، در دو کلس کلــی دادههــای اداری ) شــامل دادههــای هویتــی، اقتصــادی- اجتمعــی، دادههــای پذیرش/مراجعــه بیــار، دادههــای فــرد/ محــل ارائهدهنــده خدمــات، دادههــای فــرد ثبتکننــده اطلعــات و دادههــای مکانــی( و دادههــای بالینــی )شــامل تاریخچــه پزشــکی فــردی¬– خانوادگــی، ارزیابــی سیســتمها، دادههــای حادثــه، داده¬هــای آزمایشــگاه، دادههــای دارویــی، دادههــای تصویربــرداری پزشــکی، دادههــای اقدامــات پزشــکی و جراحــی، دادههــای ســیر بیــاری، دادههــای پیگیــری، داده¬هــای پیامــد درمــان، و دادههــای فــوت( تعییــن گردیدنــد. قابليــت بهکارگیــری انــواع فيلدهــاي اطلعــايت در طراحــي فــرم و بانکهــای اطلعــايت، تعريــف انــواع بانکهــای اطلعــايت بــا فرمهــای مشــ كرت يــا اختصــايص، برخــورداری از واســطهای)Interface( مناســب بــراي تبــادل اطلعــات موجــود در نرمافــزار بــا 42 ســایر سیســتمهای اطلعــات ســامت بــا پیشــتبانی از اســتانداردهای تبــادل اطلعــات، پشــتیبانی و ذخــره مســتقیم متامــي فرمــت هــاي الکرتونیکــی از جملــه فایل¬هــای صوتــی و تصویــری، امــکان جســتجو بــر اســاس متــام فیلدهــای ورودی شــامل جســتجوی ســاده، ترکیبــی، پيرشونــده و تقریبــی، ذخــره نتایــج جســتجو بــا قالــب هــاي اســتاندارد مثــل SAV ،XLS، HTML، PDF، XML و ...( ، تصديــق هويــت كاربــران بــا اســتفاده از تكنيك¬هــاي Authentication &Authorization، ثبــت و نگهــداري كامــل عملكــرد كاربــران سيســتم)File Log(، امــکان رمزنــگاری داده¬هــا، از جملــه حداقــل قابلیتهــای پیشــنهادی بــرای نرمافــزار جامــع ثبــت بیمریهــا و پیامدهــای ســامت، بودنــد. بــرای طراحــی مــدل مفهومــی نــرم افــزار، بعــد از تدویــن ســناریوهای سیســتم بــا اســتفاده از زبــان مدلســازی یکپارچــه و در نرمافــزار ویــژوال پارادایــم ) نســخه 8( منودارهــای مــدل مفهومــی ترســیم گردیــد. نتیجهگیــری: مــدل ارائــه شــده در مطالعــه حاظــر بــه طراحــی یــک نــرم افــزار جامــع بــرای ثبــت بیــاری هــای مختلــف کمــک مــی کنــد. واژههای كليدی: ثبت بیمری ها، طراحی نرم افزار، مدل مفهومی

Development and establishment of integrated web based registration of admitted and outpatients CVD in Yazd province,

Second report

Authors:

Seyedeh Mahdieh Namayandeh , Mohammad Hosein Soltani, Leila Hadiani, Hamid Reza Dehghan, Seyed Hadi Ghasemi Zavieh Sadat, Seyed Mahmood Sadr Bafghi, Mansour Rafiei, Abbas Andishmand, Ali Pedarzadeh, Seyed Mostafa Seyed Hosseini, Seyed Jalil Mirjalili, Mehdi Hadazadeh, Shahriar Mali,Hossein Moshtaghion, Habibollah Hosseini, Maryam Janatimoghadam, Samaneh Jalilian, Mohamad Hosien Abdollahi.Jalal Dastmalchi, Mahmood Emami.

Coworkers: Fatamh Gholami, Shahnaz Loghmani, Sara Ajdar, Mohammad Mehdi Dehghanizadeh, Mohsen Khatibi, Gita Moghdasi, Sahar Aghaee, Nahid Zare, Zohre Alizadeh, Fatemeh Hosseini Koohgard, Banafshe Rashidi Meibodi, Maryam Naghibi, Parisa Ayatollahi,Shahla Akbari, Soheila Lesan, Parisa Koochakzadeh, Farzaneh Rahmani, Sedighe Dehuee, Elahe Abbasi Shavazi, Abbas Dehghan, Fariba Herandi,Ahmad Shekari, Yasaman Motaghedi.Masood Mozafari

Yazd cardiovascular research center, yazd university of medical sciences Medical informatics department, mashahd medical university Corresponded author: seyedeh mahdieh namayandeh ,MD PhD, epidemiologist. yazd cardiovascular research center [email protected]

Introduction: Ischemic heart disease (IHD) is the leading cause of death and years of life lost in Iran and most of the countries of the world. Prevention programs nationally and internationally are trying to reduce the burden of this disease. Using a reliable and integrated index which is constantly attainable and measurable is necessary to evaluate the effectiveness of prevention and treatment programs. With the establishment and starting up the national document of non-communicable diseases with the confirmation from WHO in the country, Yazd university of medical science has put reaching to this

43 11-13 December 2 0 1 8 index through improving the registration systems in its main programs. As a result Yazd cardiovascular research center started to design and establishment of web based registry of IHD in admitted patients. This the second report of this system development and implementation in Yazd province. As a result we can share our data with other registries at national and international so we can compare our result with them and use it in health promotion policy. On the other hand IHD registry data can be use in education of cardiology residences and research goals. Methods and materials: IHD record forms development and pilot study: We needed to have IHD outcome definition, valid and reliable variables within YCDR(Yazd cardiovascular disease registry ) forms. So we design 4 YCDR form contain Two events: Acute myocardial infarction (ST elevation and non ST elevation), Decompensate Heart failure (ischemic heart failure) Three Procedures: PCI, Coronary Artery bypasses Surgery (CABG), Coronary artery catheterization (coronary angiography. Acute myocardial infarction (ST elevation and non ST elevation), We considered all variables compatible to Persian, European and American IHD registration systems. We piloted all 5 forms at least for 1 year and finalized them. Web based YCDR software was development concordant to YCDR form building. On the other hand after discharge follow up was design in format of follow up clinic too. We considered at least 5 years follow up for MI , CABG and PCI patients. These patients were referred to rehabilitation ward during their follow up. Medical Registry Framework medical informatic standard based system was used We piloted project for facility and controlled according to inclusion of all patients with IHD such as MI,CABG and PCI Preliminary analysis: Acute MI Up to now about 2242 case of Acute MI with 62.8+14 rang (28-92). Male were 8 years younger than female. 60.2 Vs. 68.2. 29.4 % were female. PPCI( Primary percutaneous coronary angioplasty): We recorded PPCI in 69% of all STEMI after 247 project. CABG (Coronary Artery Bypass Surgery): We regiatered 1240 patient indewent CABG. 33% was female. 68% under surgery by off-pump method. Follow up: All patients was called and invited to follow up clinic and received a runtime care. Conclusion: Development and establishment of integrated web based registration of admitted and outpatients CVD in Yazd province is possible and feasible. Second report Key words: Registry, disease registry, ischemic heart disease, web based comprehensive system development

44 Development of a Minimum Data Set for an Inpatient Registry in Iran

Nafiseh Hosseini1, MohammadHossein Hajiebrahimi2, Kazem Zendehdel3, Saeed Eslami*4

1. Department of Medical Informatics, Mashhad University of Medical Sciences, Mashhad, Iran, [email protected] 2. Department of Epidemiology, School of Public Health, Golestan University of Medical Sciences, Gorgan, Iran, [email protected] 3. Deputy of Research, Cancer Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, [email protected] 4. Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran

Introduction: A standard minimum data set is used during the data collection process to empower policy makers having effective decision making. The objective of the current study was to develop a minimum data set extracted from the patient record. It can be employed as the basis to establish an Inpatient Registry. There are many parameters in the patient record, so a development of a minimum dataset is really critical for Inpatient Registry. Method: To determine the standard minimum data set, a comprehensive review was conducted in 2018 to extract data using source from PubMed, Scopus, Web of Science, Science Direct databases. Search strategy was established using keywords related to minimum data set (Dataset, Dataset as topic, Common data element, Registries, Minimum dataset), as well as Inpatient Registry keys (Inpatient, Patient, Hospitalized). Bold keywords are also searched as MeSH terms. As some elements did not exist in the patient records a focus group discussion was established in the next step to determine the accessibility of data elements. Some elements were excluded by the experts’ opinion (including primary and secondary diagnosis). Finally, the data was categorized according to their types. Results: About 38 elements were obtained from review. Some elements such as primary and secondary diagnosis were deleted by experts’ view. Then, data elements were categorized into 4 categories as Patient data (age, gender, personal registration number), Geographical data (hospital/ clinic, department), Administrative data (data admission, date of discharge, length of stay), Medical data (main diagnosis, external cause of injury and poisoning). Conclusion: Developing a standard minimum data set is an initial step in establishment of registries. Currently, according to the conditions of hospitals in the Iran, some information such as primary and secondary diagnosis are not recorded or are recorded by an unacceptable quality, in most cases. Therefore, it is necessary to optimize the minimum data set extracted from Inpatient registries in developed countries to be applicable in developing countries such as Iran. Keywords: Inpatient registry, Minimum data set, Data element *Corresponding author: Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran, [email protected]

45 11-13 December 2 0 1 8

Key success factors in the implementation of diseases registry systems: A literature review

Mohamad Jebraeily1, Shahla Fozoonkhah 2 1. Department of Health Information Technology, Urmia University of Medical Sciences, Urmia , Iran 2. Ministry of Health and Medical Education, Tehran, Iran

Background: Nowadays many countries managed to set up diseases registry systems for monitoring patients and evaluating the impact of treatment on their health outcomes. In fact, the registry systems can be as useful tool to manage prevention and control activities, epidemiology research and health policy. The purpose of this study was to identify key success factors in the implementation of disease registry systems. Methods: This study was a literature review that conducted on three databases including PubMed, EMBASE, and Cochrane Library with using relevant MeSH keywords (diseases registry OR patient registry AND key success factors OR critical success factors) to identify papers published in English from 2000 to 2018. Finally, 13 reviewed articles met the inclusion criteria. Results: The findings from this review identified that in a number of articles, key success factors for implementing a registry system categorized based on the main headings. Main headings in the articles were “organization, financial support, establishing proper rules and regulations, determining minimum data set, continuous feedback to the stakeholders, electronic documentation, data handling, planning, leadership, registrars training, strategies to motivate participants and ownership.” Conclusions: The diseases registry systems can play a significant role in the enhancement of clinical practice and outcomes, but the implementation of these systems is challenging. Therefore, it is very important that government and scientific institutions should active participation in developing of the registry systems via considering key success factors and also creating the necessary infrastructure and appropriate culture making. Key words: disease registry systems, key success factors, health information management

Key success factors in the implementation of diseases registry systems: A literature review

Mohamad Jebraeily1, Shahla Fozoonkhah2 1. Department of Health Information Technology, Urmia University of Medical Sciences, Urmia , Iran 2. Ministry of Health and Medical Education, Tehran, Iran.

Abstract: Background: Nowadays many countries managed to set up diseases registry systems for monitoring patients and evaluating the impact of treatment on their health outcomes. In fact, the registry systems can be as useful tool to manage prevention and control activities, epidemiology research and health policy. The purpose of this study was to identify key success factors in the implementation of disease registry systems. Methods: This study was a literature review that conducted on three databases including PubMed, EMBASE, and Cochrane Library with using relevant MeSH keywords (diseases registry OR patient registry AND key success factors OR critical success factors) to identify papers published in English from 2000 to 2018. Finally, 13 reviewed articles met the inclusion criteria. Results: The findings from this review identified that in a number of articles, key success factors for implementing a registry

46 system categorized based on the main headings. Main headings in the articles were organization, financial support, establishing proper rules and regulations, determining minimum data set, continuous feedback to the stakeholders, electronic documentation, data handling, planning, leadership, registrars training, strategies to motivate participants and ownership. Conclusions: The diseases registry systems can play a significant role in the enhancement of clinical practice and outcomes, but the implementation of these systems is challenging. Therefore, it is very important that government and scientific institutions should active participation in developing of the registry systems via considering key success factors and also creating the necessary infrastructure and appropriate culture making. Key words: disease registry systems, key success factors, health information management Keywords: disease registry systems, key success factors, health information management

Designing and building a registry system for data collecting of patients with cancers for implementation in hospitals and clinics with oncology specialty

Marzieh Kordi1, Amirabbas Azizi2, Alireza kordi3 1. MSc student of medical informatics, faculty of research, Faculty of Paramedicine, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. 2. Assistant Professor of Medical Informatics, Department of Health Information Technology, Faculty of Paramedical Sciences, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran (Author- [email protected]) 3. Student of medicine, , faculty of research, Faculty of medicine, Iran University of Medical Sciences, Tehran, Iran

Introduction: today, Cancer is one of the leading causes of death worldwide. So an information system is essential to evaluate the epidemiological data of cancer in the population and collect the most accurate data about the demographic characteristics of the patients. Therefore, the aim of this study was to design and build a registry system for data collecting of patients with cancers for implementation in hospitals and clinics with oncology specialty Methods: This study was a developmental- operational one that was carried out in five steps. In the first part, the implementation of the project was examined in the term of the need for changing the existing systems and the facilities. In the second stage, the guidelines for implementing the National Cancer Registry were used to determine the data needed for the recording of cancer cases. In the third step, the objective-oriented model of the software for recording cancer diseases, was developed. In the fourth step, the properties of the records and the database fields of system were designed in the environment of SQL Server 2014 Management Studio and in the fifth step, graphical features and C # programming were used in the environment of Visual Studio 2015 to design the program. Findings: An analysis of the existing conditions in the five fields including the benefits of changes, existing constraints, structural barriers, imaginary benefits, feasibility of implementing, feeling needs showed the necessity of designing and constructing a registry system for recording the data of patient with cancer for implementation In hospitals and clinics with oncology specialty. This software consists of several parts: 1) Basic information entry a) Definition of disease b) Definition of users 2) patient’s demographic information (admission) 3) times of patients admission to clinic or hospital 4) records of the patients individual information of 5) Reports on all information about patients 6) Software guide. Conclusion: Based on the principles of the needs for assessment of Cancer Control Programs in the population, an appropriate software was designed. Although there is a need for continuous control and reform in this system, this program seems to have the ability to enter in hospitals and clinics with

47 11-13 December 2 0 1 8 oncology specialty. Keywords: Oncology, Cancer Registry, Registry system, Software

Purposes of the Registry: Key Factor for Design the Patient Registry

Seyedeh Masoumeh Ghoreishi1, Reza Ghadimi2, Ali Bijani3 1. Cellular and Molecular Biology Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, I.R.Iran 2. Social Determinants of Health Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, I.R.Iran 3. Social Determinants of Health Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, I.R.Iran

Abstract: A patient registry is an organized database that uses observational study to store and analyze information about the occurrence and incidence of a particular disease, procedure, event, device, or medication. A patient registry should be designed according to its main purpose. Although registries can serve many purposes but in this study four major purposes of registry including natural history of disease (evaluating characteristics, management and results with or without treatment), cost- effectiveness (determining device performs as intended in the general population of patients and the general chaos of clinical practice), safety or harm (assessing quantify risk or to attribute it properly), quality of care ( understanding the degree to which health services for individuals and populations increase the likelihood of desired health results and are consistent with current professional knowledge) was described. Keywords: Registry, Database, Observational study, Disease

Developing minimum data set to Iranian injury-related violence registry program

Kamal Gholipour1, Saeed Dastgiri 2, Shabnam Iezadi 3, Mahasti Alizadeh4, Moha- mad Asghari Jafarabadi5, Farzad Azizinia6, Aysan Derakhshi Radvar6 1. Assistant Professor of Health Services Management, Iranian Center of Excellence in Health Manage- ment, School of Management and Medical Informatics, Tabriz University of Medical Sciences, Tabriz, Iran. E-mail: [email protected] 2. Professor of Epidemiology, Department of social medicine, Faculty of Medicine, Tabriz University of Medical Sciences, Tabriz, Iran. 3. PhD in Health Services Management, Social Determinants of Health Research Center, Student Research Committee, Tabriz University of Medical Sciences, Tabriz, Iran. 4. Professor of social medicine, Social Determinants of Health Research Center, Student Research Commit- tee, Tabriz University of Medical Sciences, Tabriz, Iran. 5. Professor of Biostatistics, Department of Statistics and Epidemiology, Faculty of Health, Tabriz University of Medical Sciences, Tabriz, Iran. 6. Medical Student, Faculty of Medicine, Tabriz University of Medical Sciences, Tabriz, Iran 48

Abstract: Abstract- The aim of this study was to develop minimum data set to Iranian injury-related violence registry program. Quantitative, qualitative methods and literature review in four steps was used to developing the minimum data set for injury-related violence registry program. In the first step World Health Organization (WHO) guideline’s items and variables for injury-related violence registry program was reviewed and extracted. After translation and re-translation of the WHO form, to consider the conditions of the East Azerbaijan province based on the opinion of experts, by using focus group discussion and expert panel, questionnaire face validity were reviewed and confirmed. In the next step, questionnaire was sent to experts to assess its content validity considering Content Validity Index (CVI) and Content Validity Ratio (CVR). The final questionnaire’s CVI and CVR were 0.83 and 0.89 respectively. Questionnaire reliability was confirmed based on Cronbach’s alpha index (α=0.82) in a pilot study by participation of 60 victims. The final minimum data set consists of three main parts: 1. demographic characteristics of victims, 2. Event characteristics (time and location, damage, type of injury, etc.), and 3. Offenders’ demographic characteristics. Keywords : minimum data set, registry program, injury-related violence

Violence-related injury registry system; a case study from East- Azerbaijan

Mahasti Alizadeh1, Shabnam Iezadi2, Kamal Gholipour3, Aliakbar Taheraghdam4, Ayda Feizollahi Vahid5, Hosein Mirzajanzadeh6, Ali Ashraf Seif Farshad7 1. Social Determinants of Health Research Center, Health Management and Safety Promotion Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran 2. Iranian Center of Excellence in Health Management, School of Management and Medical Informatics, Tabriz University of Medical Sciences, Tabriz, Iran. 3. Tabriz Health Services Management Research Center, Health Management and Safety Promotion Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran. 4. Neurosciences Research Center, Tabriz University of Medical Sciences, Tabriz, Iran. 5. Social Determinants of Health Research Center, Health Management and Safety Promotion Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran 6. Forensic Medicine research center, Iranian Legal Medicine Organization, East Azerbaijan, Iran 7. Forensic Medicine research center, Iranian Legal Medicine Organization, East Azerbaijan, Iran

Abstract: Violence is a leading cause of injuries and death worldwide and recently has been known as a serious public health problem. The aim of this case study is to describe the violence-related injury registry system (VRIRS) in East-Azerbaijan, Iran. Three main goal was followed in establishment of the VRIR system in East-Azerbaijan: 1) improvement of the quality of services for victims, 2) proving valid and reliable data for planning and resource allocation, and 3) trend analysis on intensive physical and sextual violence. VRIR was designed using quantitative and qualitative research methods, and literature reviews. Trough literature review we reviewed the similar registry system in other countries. Next, we provided the research proposal to design the registry system. The main focus points regarding the design of an appropriate VRIRS included: sources of accessible data, types of stakeholders, characteristics of data and target population, principles of registry ethics, data collection and quality assurance. In VRIRS data is collected through several data source including: forensic medical centers, hospital emergency departments, social emergency departments of welfare organization, and health centers. Quality

49 11-13 December 2 0 1 8 appraise of data is implemented automatically through registry software, and, manually by an internal assessor. The results of VRIRS will be used for planning to improve the victim’s services in medical centers and to violence control. Keywords: Keywords: Registry, Injury-related violence, Public health, Hospital emergency, Social emergency, Health center.

Autism spectrum disorder registry program in East-Azerbai- jan: A case study

Hassan Shahrokhi1, Sanaz Norouzi2, Ayyoub Malek3, Shahrokh Amiri4, Golamreza Noorazar5 1. Research Center of Psychiatry and Behavioral Sciences, Tabriz University of Medical Sciences, Tabriz, Iran 2. Research Center of Psychiatry and Behavioral Sciences, Tabriz University of Medical Sciences, Tabriz, Iran 3. Research Center of Psychiatry and Behavioral Sciences, Tabriz University of Medical Sciences, Tabriz, Iran 4. Research Center of Psychiatry and Behavioral Sciences, Tabriz University of Medical Sciences, Tabriz, Iran 5. Research Center of Psychiatry and Behavioral Sciences, Tabriz University of Medical Sciences, Tabriz, Iran

Abstract: برنامــه ثبــت اوتیســم از ســال 1392 بــا هــدف ارتقــای خدمــات تشــخیصی و مراقبتــی کــودکان مبتــا بــه طیــف اوتیســم در دانشــگاه علــوم پزشــکی تربیــز ایجــاد شــد. در ایــن مقالــه بــه توصیــف ویژگــی هــای برنامــه ثبــت اوتیســم پرداختــه شــده اســت. برنامــه ثبــت اوتیســم یــک برنامــه ثبــت بیــاری از نــوع منطقــه ای مــی باشــد کــه در اســتان آذربایجــان رشقــی اجــرا مــی شــود. منابــع اطلعاتــی اولیــه شــامل کلنیــک هــای فــوق تخصصــی روانپزشــکی کــودک و نوجــوان و نورولــوژی کــودکان و نیــز کلینیــک فــوق تخصصــی تکامــل مــی باشــند. حداقــل داده هــای مــورد نیــاز شــامل داده هــای دموگرافیکــی و تشــخیصی مــی باشــند کــه بــر اســاس ابــزار تشــخیصی DSM-5 صــورت میگیــرد. مــوارد ثبــت شــده بــه طــور ســاالنه مــورد ارزیابــی مجــدد قــرار میگیرنــد. ارزیابــی مجــدد ســاالنه شــامل بررســی مجــدد متغیرهــای تشــخیصی و میــزان دوام آن هــا در طــول زمــان٬ ارزیابــی متغیرهــای درمانــی و عملکــردی و اطلعــات مربــوط بــه اســتفاده از خدمــات مــی باشــد. مبنظــور کنــرتل کیفــی اســرتاتژی هــای متعــددی در نظــر گرفتــه شــده اســت از جملــه: ورود اطلعــات دســتی بــه صــورت دوبــار چــک کــردن توســط مســئول ارزیابــی، ارزیابــی مجــدد نتایــج توســط سیســتم بــه طــور خــودکار، و بازدیدهــای دوره ای از مراکــز غربالگــری بــرای مشــاهده ی چگونگــی فراینــد بــر اســاس چــک لیســت هــای از پیــش طراحــی شــده. همچنیــن تیــم پژوهشــی آبیلــر در چهارچــوب برنامــه ثبــت اوتیســم پژوهــش هایــی را در حیطــه هــای تعییــن گرهــای ســامت، دسرتســی بــه خدمــات، کیفیــت خدمــات، برنامــه هــای آموزشــی و مراقبتــی اجــرا منــوده اســت. بــر اســاس نتایــج حاصــل از برنامــه ثبــت تــا کنــون حــدود 600 مــورد کــودک اوتیســتیک ثبــت شــده اســت. واژههای كليدی: اختلل طیف اوتیسم، ثبت، اختلالت عصبی-تکاملی

Challenges and facilitating factors of establishment of a violence- related injury registry system; a qualitative study in Iran

Shabnam Iezadi1, Mahasti Alizadeh2, Kamal Gholipour3, Bahram Samadirad4, Homayoun Sadeghi Bazargani5, Alireza Ala6, Delray Laghousi7 1. Social Determinants of Health Research Center, Health Management and Safety Promotion Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran 2. Social Determinants of Health Research Center, Health Management and Safety Promotion Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran 3. Iranian Center of Excellence in Health Management, School of Management and Medical Informatics, Tabriz University of Medical Sciences, Tabriz, Iran.

50 4. Forensic Medicine research center, Iranian Legal Medicine Organization, Tehran, Iran 5. Road Traffic Injury Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 6. Emergency medicine research team, Tabriz University of Medical Sciences, Tabriz, Iran 7. Social Determinants of Health Research Center, Health Management and Safety Promotion Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran

Abstract: The purpose of this article is to study the feasibility of establishment of a violence-related injury registry system (VRIRS) in East-Azerbaijan province of Iran from the viewpoints of stakeholders. Unstructured interviews and focus group discussions (FGD) were conducted to obtain the in-depth exploration of stakeholders’ viewpoints regarding the importance, challenges, and facilitating factors of the establishment of a VRIRS. Purposive sampling was used until data saturation was observed. Manually content analysis was conducted within an iterative process to analyze qualitative data. Totally, 9 themes and 20 sub-themes were identified in four main areas including: importance of topic, challenges, facilitating factors, and recommendations to Improve feasibility and sustainability of a VRIRS. Public health priority, consequences of violence, and implications of violence registry system was sub-titled in importance of the establishment of a VRIRS. The most important challenges of the establishment of a VRIRS was categorized in four subthemes namely: organizational barriers, methodological challenges, and victims under-reporting. Inter-sectoral partnership was identified as the core facilitating factors in the establishment of a VRIRS. Establishment of an VRIRS were recommended as a high priority for public health system. successfully implementation of the program acquires close collaboration with partnerships from health sector, education sector, judiciary sector, and governance sector. Keywords: registry, violence, injury, public health, feasibility, qualitative study

Comparative study of data elements of cardiac rehabilitation national registry in selected countries mehrdad farzandipour1, hamidreza tadayon2, monireh sadeghi jabali3 1. professor of health information management, kashan university of medical sciences, kashan, iran 2. Ph.D student of health information management, kashan university of medical sciences, kashan, iran 3. Ph.D student of health information management, kashan university of medical sciences, kashan, iran Abstract: بیمریهــای قلبــی، عروقــی در صــدر علــل مــرگ و میــر و ناتوانــی در جهــان قــرار دارنــد. بازتوانــی قلبــی شــامل مجموعــه ای از خدمــات طبــی شــامل تغییــر ســبک زندگــی بیــار در جهــت ســبک زندگــی ســامل و برنامــه هــای ارتقــای ســامت بیــاران ماننــد کنــرتل ریســک فاکتورهــای قلبــی- عروقــی اســت کــه در نهایــت باعــث افزایــش ســطح کیفــی زندگــی بیــاران مــی شــود. وجــود داده هــای کامــل و مناســب در زمینــه بیــاری هــا مــی توانــد بــه بهبــود مدیریــت بیمریهــا منجــر شــود و بــار ناشــی از بیمریهــا را کاهــش دهــد. بــه منظــور جمــع آوری داده هــای جامــع و مناســب در هــر زمینــه ای، وجــود عنــارص داده ای مناســب کــه جــاذب داده هــا هســتند رضوری اســت. ایــن پژوهــش درصــدد اســت، عنــارص داده ای موجــود در نظــام ملــی ثبــت بازتوانــی قلبــی را در کشــورهای منتخــب بررســی و مقایســه منایــد. روش: ایــن مطالعــه، یــک مطالعــه توصیفی-مقطعــی و از نــوع کاربــردی بــود. جامعــه پژوهــش نطــام ملــی ثبــت بازتوانــی قلبــی در کشــورهای آمریــکا، کانــادا و انگلســتان بودنــد. در ابتــدا عنــارص داده ای موجــود در نظــام ثبــت ایــن کشــورها بــا اســتفاده از وب ســایت هــای معتــرب مربــوط بــه ثبــت جمــع آوری گردیــد و ســپس بــه منظــور تحلیــل داده هــای کســب شــده از ترســیم جــداول تطبیقــی اســتفاده شــد. عنــارص داده ای در شــش بعــد )شــامل: اطلعــات دموگرافیــک و اجتمعــی بیــار، ارزیابــی پیــش از بازتوانــی، داده هــای ارجــاع بیــاران، داده هــای بازتوانــی قلبــی، ارزیابــی پــس از بازتوانــی و داده هــای مربــوط بــه پیگیــری بیــاران( مــورد مقایســه قــرار گرفــت. یافتــه هــا: یافتــه هــا نشــان داد کــه هــر یــک از کشــورهای تحــت مطالعــه دارای عنــارص داده ای متحــد الشــکل در ســطح ملــی مــی باشــند. در نظــام ثبــت کشــور آمریــکا، بــه بعــد ارزیابــی بیــاران پــس از انجــام بازتوانــی و پیگیــری بیــاران، توجــه بیشــ یرت شــده و عنــارص داده ای بیشــرتی در ایــن زمینــه نســبت بــه ســایر کشــورهای تحــت مطالعــه وجــود دارد. در نظــام ثبــت کشــور انگلســتان، بعــد داده هــای مربــوط بــه بازتوانــی قلبــی بیــش از ســایر کشــورها مــورد توجــه قــرار گرفتــه اســت، درحالــی کــه در کشــور کانــادا ارزیابــی پیــش از بازتوانــی و تاریخچــه پزشــکی بیــار بیــش از ســایر کشــورها مــورد توجــه قــرار گرفتــه و نظــام ثبــت ایــن کشــور، دارای عنــارص داده ای کاملــ ی رتدر ایــن زمینــه مــی باشــد. نتیجــه گیــری: وجــود عنــارص داده ای متحــد الشــکل در ســطح ملــی و همچنیــن تعاریــف کامــل ایــن عنــارص

51 11-13 December 2 0 1 8

داده ای در یــک دیکشــری داده هــا بــرای تاســیس و مدیریــت نظــام ثبــت بازتوانــی قلبــی رضوری مــی باشــد. بــه منظــور تاســیس یــک نظــام ثبــت بازتوانــی قلبــی، پــس از مشــخص منــودن اهــداف نظــام ثبــت، تعییــن عنــارص داده ای یکــی از گامهــای اولیــه و اساســی مــی باشــد. واژههای كليدی: نظام ملی ثبت، بازتوانی قلبی، عنارص داده ای

International collaborations in national registries: history and lessons learned from Iranian-European partnership on hydatid disease registry

Majid Fasihi Harandi1, Saeid nasibi2, Faranak Jahandari3, Mohammad Ali Moham- madi4, Ali derakhshani5 1. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 2. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected] 3. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected] 4. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected] 5. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected]

Abstract: Several factors are involved in the development of a disease registry system of high quality and suitable performance. One of the major features of excellence in disease registry programs is dynamic networking and collaboration at the national and international levels. The National Registry of Hydatid Disease has been operating since 2013 by registering data of Cystic Echinococcosis (CE, hydatid cyst) cases in referral hospitals of Kerman with a subsequent development to other academic medical centers across the country. On the European side, the Italian Registry of Cystic Echinococcosis (RIEC) was developed in 2012 which subsequently expanded to several European countries through the European initiative, HERACLES project and designated as the European Register of Cystic Echinococcosis (ERCE). An international collaboration has been developed with ERCE since 2016. Communications among registries from 36 centers in different countries created an atmosphere of synergy and cooperation in the following areas of disease registry: knowledge exchange for CE case definition, improving CE management and diagnosis through clinical practices according to standardized best evidence-based approaches, arranging training workshops related to CE registry, e.g. ultrasound classification of hydatid cysts according to WHO-IWGE recommendations, an environment for collaborative research and high quality publications, potential ground for biobank development and sample exchanges, working in the mainstream of WHO plan for NTD’s surveillance and control and the critical evaluation of data quality. Furthermore there is a high potential for extending collaborations to a global scale to construct the International Registry for Cystic Echinococcosis. Keywords: Nation-wide disease registry, Internationalization, International disease registry, Networking, Europe, Hydatid cyst, Echinococcosis

52 History and lessons learned from Iranian national hydatid disease registry

Majid Fasihi Harandi1, Saeid nasibi2, Faranak Jahandari3, Mohammad Ali Mohammadi4, Ali derakhshani5 1. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 2. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected] 3. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected] 4. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected] 5. National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences Email: [email protected]

Abstract: Disease registry systems have significant contributions to the disease surveillance and quality of care. Cystic Echinococcosis (CE, hydatid cyst), a major zoonotic disease of global distribution, is endemic in Iran as well as in many countries in the Middle East, North Africa and the Mediterranean countries. Surgery and chemotherapy are the main modules of CE management. Regarding the considerable number of people undergoing hydatid surgery each year in many referral hospitals, CE registry was established with the support of the MOHME. The National Registry of Hydatid Disease has been operating since 2013 by registering data of Cystic Echinococcosis (CE, hydatid cyst) cases in referral hospitals of Kerman University of Medical Sciences (KMU) with subsequent extension of network to other academic medical centers across the country. Twelve provinces are currently joined to the registry after official administrative and ethical approvals and signing agreement with KMU. Four provinces are in the process of joining the registry. Knowledge exchange for CE case definition, improving CE management and diagnosis through clinical practices according to standardized best evidence-based approaches, arranging training workshops related to CE registry, e.g. ultrasound classification of hydatid cysts according to World Health Organization recommendations, an environment for collaborative research

Implementation and first results of Iranian cochlear implant registry

Nader Saki1, Arash Bayat2, Soheila Nikakhlagh3, Majid Karimi4, Golshan Mirmomeni5 1. Associate Professor of Otolaryngology, MS in Audiology, Hearing Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran 2. Assistnt Professor of Audiology, MS in Audiology, Hearing Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran 3. Associate Professor of Otolaryngology, MS in Audiology, Hearing Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran 4. MS in Audiology, Hearing Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran 5. MS in Biostatistics, Hearing Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

53 11-13 December 2 0 1 8

Abstract: Introduction: Currently, there is a paucity of data concerning the long-term outcomes, educational placement and quality of life of cochlear implanted (CI) patients in Iran. The aim of this national CI registry was to facilitate communication and collaboration, improve care, and create a framework for aggregate data sharing in CI research. Methods: A group of nationally represented, multidisciplinary CI providers cooperated to define a standard set of data elements to incorporate into a database built by them in association with a group of computer scientists and software designers. The CI registry database has been designed so that different centers across the country will be able to use the database for their own clinical purposes. The database utilizes a secure web interface to administer electronic case report forms to clinicians and families of implanted children. Patients will be evaluated with a set of standardized questionnaires prior to initial device activation (baseline) and at three-monthly follow- up intervals up to 24 months and annually thereafter. Results: Approximately 6 months after the first release of the database, clinical information on 252 patients (135 males and 117 females; 2-56 years old) has been entered from Kuzestan CI center. The information regarding to patient comorbidities, device use, auditory performance, quality of life and health-related utilities, across different types of CI devices were recoded in the database. Conclusion: A standardized CI registry database that is utilized by a growing network of CI centers can help strengthen research through aggregate data sharing. Future steps include (1) expanding adoption, (2) scaling the database to include more patients, and (3) integrating the database with other software platforms (e.g. electronic health records, processors).

واژههای كليدی: کاشت حلزون، ثبت بیمری، ایران

WHO Registration and surveillance systems for Suicide attempts

Kourosh Sayehmiri1, Khadijeh Mamshali2, Mandana Sarokhani3 1. Modeling in Health Research Center, Biostatistics Department, Ilam University of Medical Sciences, Ilam, Iran 2. Biostatistics department, faculty of health ,Ilam University of Medical Sciences, Ilam, Iran. 3. PhD student of psychology, Psychology Department, Llam Branch, Islami Azad University , Ilam, Iran.

Introduction: Abstract Suicide is the second leading cause of death in people between the ages of 15 and 24, more than 80% of suicidal attempts are under the age of 30. Unfortunately, there is currently incomplete information about suicide .Therefore, a system for suicide registration and surveillance of suicide. is very important. Aim of the manual is to improve standardization within and between countries with regard to establishing and maintaining a surveillance system of hospital presented suicide attempts Method: A group of researchers in the fields of Epidemiology, Biostatistics, Psychology, Psychiatry ..., from different countries, provide a registration and surveillance system for suicide and recommend it to apply in the countries. Results: The step of Registration and surveillance systems for Suicide attempts were: Developing and implementing a surveillance system Training of staff Reporting of outcomes and dissemination Maintenance and sustainability over time 54 Terminology and nomenclature Overview of existing systems/ projects Discussion: WHO Registration and surveillance systems for Suicide attempts is a very useful system to imply in Iranian medical sciences universities Keywords: Suicide ,registration system, surveillance, WHO

Developing minimum data set to iranian injury-related violence registry program

Dr Kamal Gholipour1, Dr Saeed Dastgiri2, Dr Shabnam Iezadi3, Dr Mahasti Alizadeh4, Dr Mohamad Asghari Jafarabadi5, Farzad Azizi Niya6, Aysan Derakhshi Radvar7 1. Assistant Professor of Health Services Management, Iranian Center of Excellence in Health Management, School of Management and Medical Informatics, Tabriz University of Medical Sciences, Tabriz, Iran. E-mail: [email protected] 2. Professor of Epidemiology, Department of social medicine, Faculty of Medicine, Tabriz University of Medical Sciences, Tabriz, Iran. E-mail: [email protected] 3. PhD in Health Services Management, Social Determinants of Health Research Center, Student Research Committee, Tabriz University of Medical Sciences, Tabriz, Iran. E-mail: [email protected] 4. Professor of social medicine, Social Determinants of Health Research Center, Student Research Committee, Tabriz University of Medical Sciences, Tabriz, Iran. E-mail: [email protected] 5. Professor of Biostatistics, Department of Statistics and Epidemiology, Faculty of Health, Tabriz University of Medical Sciences, Tabriz, Iran. E-mail: [email protected] 6. Medical Student, Faculty of Medicine, Tabriz University of Medical Sciences, Tabriz, Iran 7. Medical Student, Faculty of Medicine, Tabriz University of Medical Sciences, Tabriz, Iran

Abstract: ایــن مطالعــه بــا هــدف طراحــی حداقــل داده هــای مــورد نیــاز برنامــه ثبــت خشــونت منجــر بــه جــرح صــورت گرفتــه اســت. تعییــن حداقــل داده هــای رضوری برنامــه ثبــت خشــونت منجــر بــه جــرح بــا اســتفاده از روش هــای کمــی، کیفــی و مــرور متــون و در چهــار مرحلــه انجــام گرفــت. در مرحلــه اول بــا روش مــرور متــون فــرم حداقــل داده هــای مــورد نیــاز بــرای برنامــه ثبــت جراحــات ناشــی از منازعــات از گایدالیــن ســازمان جهانــی بهداشــت اســتخراج شــد. بعــد از ترجمــه و بــاز ترجمــه فــرم حداقــل داده هــای مــورد نیــاز ایــن فــرم بــر اســاس رشایــط اســتان آذربایجــان رشقــی و بــا نظــر متخصصــان بــا روش بحــث گروهــی متمرکــز و پنــل متخصصــان مــورد بررســی قــرار گرفــت و بنابــه رشایــط زمینــه ای ایــران تعــدادی از مــوارد حــذف و تعــدادی مــوارد جدیــد بــه فــرم اضافــه شــد و همچنیــن در برخــی از مــوارد تغییراتــی اعــال شــد. در مرحلــه بعــد فــرم حداقــل داده هــا بــرای محاســبه CVI و CVR در اختیــار متخصصــان قــرار گرفــت تــا روایــی آن مــورد ارزیابــی قــرار گیــرد. بــه منظــور ســنجش پایایــی، فــرم نهایــی بــر روی 60 منونــه مــورد آزمــون قــرار گرفــت. فــرم حداقــل داده هــای رضوری برنامــه ثبــت بــا CVI 83/0 و CVR 89/0 و آلفــای کرونبــاخ 82/0 مــورد تاییــد قــرار گرفــت. فــرم داده هــا شــامل ســه قســمت اصلــی مــی باشــد: 1-مشــخصات فــردی آســیب دیــده، 2-ویژگــی هــای رخــداد )زمــان و مــکان، نحــوه آســیب، نــوع آســیب و ...( و 3-مشــخصات فــردی آســیب رســان. واژههای كليدی: حداقل داده، برنامه ثبت، خشونت منجر به جرح

55 11-13 December 2 0 1 8

Persian Registry of Cardio Vascular Disease/ Heart Failure (PROVE/ HF Methodology

Ghasem Yadegarfar1, Davood Shafiei2, Mahshid Givi3, Mohammad Garak Yaraghi4, Nizal Sarrafzadegan5 1. Associate Professor of Isfahan University of Medical Sciences 2. Assistant Professor of Isfahan University of Medical Sciences 3. PhD of Isfahan University of Medical Sciences 4. Professor of Isfahan University of Medical Sciences 5. Professor of Isfahan University of Medical Sciences

Abstract: In Iran, there are few reliable epidemiologic statistics available to estimate the incidence/prevalence of cardiovascular disease and long–term survival rate of heart failure (HF). Consequent to the necessity of establishing a national registry for the accurate recording of the data of patients with HF, systematic analysis, and long term follow–up, the first registry program of HF as a part of the “Persian Registry Of cardioVascular disEase (PROVE)” was launched in Isfahan (as a pilot study) in 2015. This registry was designed to be used as a plat form for future research and in addition, as a tool to develop national guidelines for diagnosis, treatment, and prevention of HF. Methodology: To register information of patients with HF, a researcher-designed questionnaire was used, which was designed according to the results of the Swedish Heart Failure Registry (S-HFR) and Thai Acute Decompensated Heart Failure Registry (Thai ADHERE). After validation of the questionnaire, the protocol and the related dictionary, including a full description of the procedure, dictionary of all questions, options, and codes were written. Finally, questionnaires, protocol, and dictionary were approved by Quality Control (QC) of PROVE Committee. In order to register patients with HF the hospital recorded data were used retrospectively and followed up for 6 and 12 months. The HF registry personnel received three initial trainings of two-hour long and a monthly retraining session. Data collection and management were performed under the supervision of the QC group. Results: Since 2015, more than 2460 patients have been registered, containing 3308 records. More than 60% (1481) were male, the average age of patients was 70.5 (SD=13.2), min=0 and max=100 years old. Getting worse HF by 88% (2162 cases) was the main reason for hospitalization and new HF cases by 2% (50 cases) was the second. Conclusion: In spite of administrative problems, PROVE/ HF was successfully developed and implemented in Isfahan as a pilot study. It indicated it is possible to implemented the PROVE/HF at national level. The registry provides a valuable source of valid data that could be used for future research, re-evaluation of current HF management and more specifically, gap analysis, prevention, treatment, and control by health care decision makers. Keywords: Registry, Heart Failure, Retrospective

Pitfalls and Challenges in Nation-wide Registries: A Review on 5-Year Experience of National Hydatid Disease Registry

Mohammad Ali Mohammadi1, Saeid Nasibi2, Ali Derakhshani3, Faranak Jahandari4, Majid fasihi harandi5 1. National Registry of Hydatid Disease Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 2. National Registry of Hydatid Disease Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 3. National Registry of Hydatid Disease Research Center for Hydatid Disease in Iran, Kerman University of 56 Medical Sciences, Kerman, Iran Email: [email protected] 4. National Registry of Hydatid Disease Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 5. National Registry of Hydatid Disease Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected]

Abstract: The National Registry of Hydatid Disease has been operating since 2013 by collecting the retrospective and prospective data on surgical cases in referral hospitals in Kerman with a subsequent development in other University referral hospitals across the country. An international collaboration has been developed with the European Registry of Cystic Echinococcosis (ERCE), since 2016. Five years of national and international experience has led to the development of the first registry guideline for hospital reports of “National Hydatid Disease Registry”. However, due to the multidisciplinary nature of hydatid disease, there are challenges and gaps in disease registration and monitoring, which are divided into three main sections: A) administrative and operational gaps, B) clinical and patient-related pitfalls and C) challenges related to case registry management. Administrative and operational gaps include the participation of university medical centers, systematic referral system, pitfalls in medical records and patient reports, unintegrated Hospital Information System (HIS) related to disease registration in private/non-governmental medical centers. Clinical and patient-related pitfalls are as follows: Failure to report WHO ultrasound classification for CE, records of CE relapse cases. The third part includes missing or inaccurate patient records, discrepancies between primary and post-surgical diagnosis. The present article describes the impact of the above factors on the process of the disease registry and proposes a conceptual model of the challenges in case detection and registration. Keywords: National Registry, Cystic Echinococcosis, Hydatid cyst, HIS, Referral system, Missing data

Drawing a screenshot from medical informatics research in chronic disease registries: a content analysis on the major medical informatics conferences

Abbas Sheikhtaheri1, Reza Safdari2, Hamideh Ehtesham3 1. Assistant Professor, Department of Health Information Management, Iran University of Medical Sciences, Tehran, Iran 2. Professor, Department of Health Information Management, Tehran University of Medical Sciences, Tehran, Iran. 3. Assistant Professor, Department of Health Information technology, Birjand University of Medical Sciences, Birjand, Iran

Abstract: Background: Disease registries play an important role in managing many chronic diseases. Designing and using “disease registers” is one of the major issues in the fields of health information management and medical informatics; evolution of ideas and trends in these growing scientific fields should be particularly taken into consideration. Methods: This research was conducted through a content analysis. All the articles presented in three conferences, AMIA, MIE, and MEDINFO during 2006-2016 were reviewed to identify articles related to chronic disease registries and analyzed based on their origin and themes. Results: In the medical informatics conferences, 5504 articles have been accepted as oral or poster presentations and only less than one percent of them were related to “chronic disease registries”. “Data Integration” theme, with 16 articles, and “legal and ethical aspects” with only one article has the maximum and minimum number of related articles respectively. Conclusions: Medical informatics

57 11-13 December 2 0 1 8 researchers can develop a variety of studies to develop disease registries or use of registries to develop medical informatics techniques. Keywords: Registries, chronic diseases, content analysis

15-year Experience of Tehran Heart Center in Cardiovascular Disease Registry

Saeed Sadeghian1, Hamidreza Pourhosseini2, Mojtaba Salarifar3, Farzad Masoudkabir4 1. Associate Professor of Cardiology, Tehran Heart Center, Tehran University of Medical Sciences, Tehran, Iran- [email protected] 2. Associate Professor of Cardiology, Tehran Heart Center, Tehran University of Medical Sciences, Tehran, Iran- [email protected] 3. Associate Professor of Cardiology, Tehran Heart Center, Tehran University of Medical Sciences, Tehran, Iran-- [email protected] 4. Assistant Professor of Cardiology, Tehran Heart Center, Tehran University of Medical Sciences, Tehran, Iran- [email protected]

Abstract: بــر طبــق آخریــن گــزارش ســازمان بهداشــت جهانــی بیــاری ایســکمیک قلبــی و ســکته مغــزی طــی 15 ســال گذشــته بــه ترتیــب رتبــه اول و دوم را در میــزان مــرگ و میــر جهانــی حفــظ کــرده انــد. در ایــن میــان ایــران و عمــده کشــورهای غــرب آفریقــا بیشــرتین میــزان شــیوع تعدیــل شــده بــا ســن را از نظــر بیــاری هــای قلــب و عــروق در جهــان بــه خــود اختصــاص داده انــد. بنابرایــن بــه نظــر مــی رســد بیــاری هــای قلــب و عــروق، نــه تنهــا از اولویــت جهانــی بــرای مقابلــه و پیشــگیری و نیــز برنامــه ریــزی درمــان برخوردارنــد، بلکــه از نظــر ملــی نیــز توجــه ویــژه ای را مــی طلبنــد. بدیهــی اســت کــه برنامــه ریــزی هــای ملــی چــه در حــوزه پیشــگیری و چــه در حــوزه درمــان نیازمنــد اطلعــات جامــع و دقیــق اســت تــا بتوانــد بســرتی بــرای تصمیــم ســازی و سیاســت گــذاری مبتنــی بــر شــواهد ســامت باشــد. مرکــز قلــب تهــران بــه عنــوان یکــی از بزرگرتیــن و مجهزتریــن مراکــز تخصصــی و فــوق تخصصــی قلــب و عــروق در منطقــه خاورمیانــه از هــان ابتــدای تاســیس بــا توجــه بــه هنــگام بــه اهمیــت رجیســرتی و ثبــت پیامدهــای ســامت اقــدام بــه طراحــی بانــک هــای اطلعاتــی مختلــف در حــوزه قلــب و عــروق کــرده اســت تــا بتوانــد هرچنــد درســطح یــک مرکــزی بــه برخــی از ســواالت مطــرح در خصــوص اپیدمیولــوژی، ویژگــی هــای بالینــی، و پیــش آگهــی بیــاری قلبی-عروقــی و نتایــج پروســیجرهای قلبــی در ایــران پاســخ دهــد. ایــن مرکــز در حــال حــارض دارای ۸ بانــک اطلعاتــی مــی باشــد کــه از ســال ۱۳۸۱ بــه ترتیــب طراحــی و راه انــدازی شــده انــد. در ایــن مقالــه مــا بــر آنیــم تــا بــه معرفــی بانــک هــای اطلعاتــی مرکــز قلــب تهــران پرداختــه و ســپس بــر مبنــای تجربــه ۱۵ ســاله ایــن مرکــز بــه طــرح چالــش هــای ثبــت بیــاری قلبی-عروقــی در ســطح ملــی بپردازیــم. واژههای كليدی: بیمری قلبی-عروقی، جراحی قلب، آنژیوگرافی، آنژیوپلستی، بانک اطلعاتی

Establishment of Persian Cardiovascular Registry System- Phase 1: Angyography, Angioplasty and STEMI

Asieh Mansouri1, Alireza Khosravi2, Feridoun Noohi3, Samad Ghaffari4, Mohammad Javad Zibaeenezhad5, Mahnaz Jozan6, Nizal Sarrafzadegan7 1. Hypertension Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 2. Interventional Cardiology Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 3. Rajaie Cardiovascular Medical and Research Center, Iran University of Medical Sciences, Tehran, Iran 4. Cardiovascular Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 5. Cardiovascular Research Center, Shiraz University of Medical Sciences, Shiraz, Iran

58 6. Hypertension Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 7. Isfahan Cardiovascular Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran

Abstract: مقدمــه: ســامانه ی ثبــت بیــاری هــای قلبی-عروقــی توســط شــبکه ی قلــب و عــروق ایــران و بــا هــدف ثبــت متــام حــوادث قلبی-عروقــی، در ســال 1394 طراحــی و در 1396 راه انــدازی گردیــد. بــا توجــه بــه شــیوع باالتــر بیــاری هــای گرفتــاری عــروق کرونــری، نســبت بــه ســایر بیــاری هــای قلب-عروقــی، فــاز اول ایــن سیســتم ثبــت بــا ثبــت مــوارد آنژیوگرافــی و آنژیوپلســتی و اســتمی )در برخــی اســتانها( آغــاز گردیــده و بــه زودی ثبــت ســایر ســندروم هــای کرونــری نیــز بــه آن افــزوده خواهــد شــد. روش اجــرا: در ایــن ســامانه 5 فــرم جهــت ثبــت اطلعــات پایــه، آنژیوگرافــی، آنژیوپلســتی، ترخیــص و پیگیــری طراحــی گردیــده اســت. فــرم پیگیــری تنهــا بــرای بیــاران تحــت آنژیوپلســتی قــرار گرفتــه و در مــاه هــای 1، 6 و 12 پــس از آنژیوپلســتی تکمیــل مــی گــردد. ثبــت اطلعــات در ایــن ســامانه بــه صــورت آنلیــن بــوده و هــر یــک از اعضــای تیــم ثبــت )پزشــکان فلوشــیپ اینرتونشــنال کاردیولــوژی، کاردیولوژیســت هــا، رزیدنــت هــای کاردیولــوژی، پرســتاران و کارشناســان پژوهشــی مــی باشــد(، بــر اســاس ســطح دسرتســی از پیــش تعییــن گردیــده، امــکان ثبــت، مشــاهده و ویرایــش داده هــا را خواهنــد داشــت. تضمیــن کیفیــت ایــن سیســتم ثبــت، از طریــق طراحــی پروتــکل جامــع نحــوه ی کار بــا ســامانه، آمــوزش و بازآمــوزی اعضــای تیــم ورود اطلعــات و کنــرتل کیفیــت آن، بــا اســتفاده از چــک لیســت هــای ســنجش صحــت اطلعــات وارد شــده در ســامانه از طریــق مصاحبــه ی تلفنــی بــا بیــار، مقایســه بــا پرونــده ی بیمرســتانی و مشــاهده ی فیلــم آنژیوگرافــی و آنژیوپلســتی انجــام مــی گــردد. نتایــج: در حــال حــارض 15 بیمرســتان دانشــگاهی واقــع شــده در اســتانهای اصفهــان، هرمــزگان، کهکیلویــه و بویــر احمــد، آذربایجــان رشقــی، فــارس، خراســان جنوبــی، ســمنان، چهارمحــال بختیــاری و خوزســتان بــه ایــن ســامانه متصــل شــده انــد. تاکنــون 20034 بیــار در ایــن ســامانه ثبــت گردیــده انــد. تعــداد مــوارد ثبــت آنژیوگرافــی، آنژیوپلســتی، اســتمی، پیگیــری هــای 1، 6 و 12 ماهــه ی ثبــت شــده در ایــن سیســتم، بــه ترتیــب 18349، 7697 ، 600 ، 2101، 936 و 22 مــی باشــد. نتیجــه گیــری: ایــن ســامانه از زمــان راه انــدازی تــا کنــون پیرشفــت قابــل قبولــی در زمینــه ی تعــداد بیــاران ثبــت شــده و گســرتش بیــن اســتانی داشــته اســت. تــاش و برنامــه ریــزی جهــت پیوســن ســایر اســتانها و اضافــه شــدن ســایر بیــاری هــای قلبی-عروقــی بــه ایــن ســامانه بــه صــورت مــداوم در دســت اقــدام مــی باشــد. واژههای كليدی: ثبت، بیمری های قلبی-عروقی، آنژیوگرافی، آنژیوپلستی

The Commencement of Congenital Heart Disease Registry in Isfahan-Iran: Methodology and Design

Bahar Dehghan1, Mohammad Reza Sabri2, Mohsen Hosseinzadeh3, Alireza Ahmadi4, Mehdi Ghaderian5, Nizal Sarafzadegan6, Hamid Reza Roohafza7 1. Assistant professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 2. Professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 3. Assistant professor of pediatrics, Pediatric Cardiology Department of Pediatrics, School of Medicine, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran 4. Associate professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 5. Associate professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 6. Professor of cardiology, Isfahan Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 7. Assistant professor, Cardiac Rehabilitation Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran

Abstract: Reported prevalence of CHDs (Congenital Heart Diseases) varies widely among studies worldwide. The incidence of CHD, total number of pediatric and adult Grown Up Congenital Heart disease (GUCH) is not determined in Iran. So, we have designed a system to register the information of patients with CHD

59 11-13 December 2 0 1 8 for the first time in our country. CHD registry is a database in which the patients data from hospitals or outpatient clinics are collected. We enrolled referrals from either new patients had come for evaluation of potential CHD or those who are being followed within the out patients clinics and entered their whole information in a website specifically designed for. All the information were collected from questionnaires by pediatric cardiologists as principle investigators. From Apr 2017 to Nov 2018, after developing the forms and website, the first 558 files were evaluated by the quality control committee. 73 files (%13) needed major revisions. Among them, 34 (%46) files were omitted totally and the 39 remaining files were revised and completed. After that revision we have changed our questionnaire and gathered 1200 patients accordingly. Registry of CHDs not only improves epidemiologic studies but also assists researchers to understand how much a disease management is useful and how to raise the quality of cares and outcomes. Moreover, this provides a better insight for policy makers to understand the extent of health-related problems as well as the issues related to the prevention and managements of congenital heart diseases all around the world. Keywords: Registry, Congenital Heart Diseases, Data Collection

An overview on the world s disease registration programs: A Systematic review

Nafiseh Rezaei1, Marzieh KhaledNoori2, Mahin Azadi3, Ali MohammadPour4 1. Ph.D student in medical library and information science, Tehran University of Medical Sciences. Iran 2. Master of Health Information Management, Hamadan University of Medical Sciences. Iran 3. Master of Science in Library and Information Science. Hamadan University of Medical Sciences. Iran 4. Faculty Member of Hamedan University of Medical Sciences. Iran

Abstract بیــاری هــای مزمــن، از شــایع تریــن و پرهزینــه تریــن مشــکلت در حــوزه ی ســامت بــه شــار مــی آینــد و یکــی از عمده تریــن علــت بیــاری هــا و مــرگ در جهــان هســتند. بــا اینکــه اطلعــات زیــادی دربــاره ی پیشــگیری از بیــاری هــای مزمــن، بــه تاخیــر انداخــن یــا جلوگیــری از بســیاری از عــوارض مربوطــه، شــناخته شــده اســت، تخمیــن زده مــی شــود کــه تــا ســال2020 ،یــک چهــارم جمعیــت دنیــا درگیــر بیمری هــای مزمــن خواهنــد شــد. داده هــای دفاتــر ثبــت بیــاری در مراکــز درمانــی، بــرای نشــان دادن کیفیــت مراقبــت مناســب بــه بیــاران مــی تواننــد مــورد اســتفاده قــرار گیرنــد، اســتفاده از سیســتم های کامپیوتــری ثبــت بیــاری، توانایــی موثــری، بــرای شناســایی و مدیریــت بیــاران مبتــا بــه یــک بیــاری خــاص را در رسارس یــک منطقــه ارائــه مــی دهــد. سیســتم ثبــت بیــاری، یــک نــرم افــزار کامپیوتــری اســت کــه بــرای ثبــت، مدیریــت و ارائــه اطلعــات در رشایــط خــاص و پشــتیبانی مدیریــت مراقبــت ســازمان یافتــه ی بیــاران مبتــا بــه یــک بیــاری خــاص و معمــوال مزمــن، اســتفاده مــی شــود. بــا توجــه بــه اینکــه در ایجــاد سیســتم های ثبــت بیــاری، رویکردهــای متنوعــی مطــرح شــده و از طرفــی اســتفاده کاربــردی از ایــن سیســتم هــا، نیازمنــد طراحــی مناســب آنهــا مــی باشــد، لــذا مطالعــه حــارض کــه بــه روش مطالعــه سیســتمتیک مــی باشــد بــه بررســی ایــن دو مقولــه مهــم یعنــی انــواع سیســتم هــای ثبــت بیــاری و کاربردهــای آن هــا و مقایســه ایــن سیســتم هــا مــی پــردازد. واژههای كليدی: برنامه های ثبت بیمری، سیستمتیک ریویوو

Clinical Cancer Registration in IR. Iran: Steps for Establishment and Results of the pilot phases at the Cancer Institute of Iran.

Monireh Sadat Seyyedsalehi1, Azin Nahvijou1, Mohammadreza Rouhollahi1, Maryam Sadat Mousavi1 , Elnaz Saeidi1, Mehran Aghemiri1, Ahad Muhammadnejad4, Mohammad Shirkhoda1, Mehrzad Mirzania1, Mohammad 60 Ali Mohagheghi1, Peyman Hadad2, Habibollah Mahmoudzadeh5,Mahdi Aghili2, Ramesh Omranipour5, Alireza Abdollahi3, Laleh Mirjomehri1, Kazem Zendehdel 1,4* 1. Cancer Research Centre, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran corresponding author: Kazem Zendehdel, MD, PhD, [email protected] 2. Radiation Oncology Research Center, Cancer Institute, Tehran University of Medical Sciences, Tehran, Iran 3. Department of pathology, school of medicine, Tehran University of medical sciences, Tehran, Iran 4. Cancer Biology Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran 5. Breast Cancer Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran

Abstract Introduction: Clinical cancer registries (CCRs) collect data of cancer patients on diagnosis, staging, procedures, treatment, and follow-up in a particular facility. CCRs are important tools for improving the quality of care of cancer patients and supporting the population bases cancer registries and cancer control program. In particular, CCRs create important infrastructure for epidemiological and clinical cancer research. We established national CCRs for malignant melanoma, breast, colorectal, stomach, esophageal cancers. In this abstract, we report the protocol and pilot phase of these registries. Method: Steps to establish the CCRs included: 1) setting objectives, 2) establishing organizational structure and steering committee, 3) scoping, 4) defining database and data standards, data sources, registration process, 5) developing software, 6) training of the registrars, 7) quality indicators, and quality control methods, 8) performing statistical analyses and preparing reports. We collected data from different sources including inpatient and outpatient service, department of radiation oncology, pathology lab, and etc. We used different international coding and data standards including ICD-O-3, SEER, FORDS 2015, and IARC standards. We used DHIS2 software for development of the registration. DHIS2 is suitable software for clinical cancer registry. We collected three years of data at the cancer institute of Iran in the pilot phase and extended the program to 8 centers from the different part of Iran (Mazandaran, Semnan, Gilan, Sabzevar, Bushehr, Urmia, Arak, and Kermanshah). Results: Our initiative of CCRs collects about 130 data elements, on average, for 5 cancer types. The total number of patients for five cancers types who admitted from 2014 for their initial treatment in the cancer institute of Iran and had inclusion criteria was 2532 patients, including 1733 breast (2014 to 2016), 212 colorectal (2014), 328 stomach (2014-2015), 151 esophagus (2014-2015), and 108 malignant melanoma (2014-2015. ) Staging was feasible in the cancer institute and staging was not possible in 89(13.69%) breast cancer, 31(28.44%) esophageal cancer, 5(2.3%) colorectal cancer, 77(47.23%) stomach cancer, and 11(19.29%) malignant melanoma was missing for defecting in the patient files or a registrar mistake in extracting information. Result: Conclusion: Establishment of the CCRs was feasible in the cancer institute of Iran. We are collaborating with several cancer centers to extend this experience and develop evidence for the quality of care and access to the diagnosis and treatment services among cancer patients across the country. This experience can be extended to other low and middle-income countries and provide international evidence or the quality of care in these countries. Keywords: Clinical cancer registries, DHIS2, cancer control, pattern of care

61 11-13 December 2 0 1 8

Approved Hospital Based Cancer Registry (HBCR) Minimum Dataset for Nigeria

Yusuf Suleiman1, Dr Sharareh R. Kalhori Niakan2, Dr Laila Shahmoradi3 1- Student 2- Professor 3- Professor Abstract Abstract Introduction Minimum dataset (MDS) collected by cancer registrar at Hospital Based-Cancer Registry (HBCR) in Nigeria varies, and uniform dataset has the potentiality for supporting data integration among the registries. Collective data can be used by the clinicians to support patient care management as well as clinical research or for academic purposes. Clinicians and policy makers have difficulties in accessing those data from the registries at the point of care or while making decision, due to diversity of data collected for registry. This can be challenging for a country with huge population, and high burden of cancer. The purpose of this work is to develop uniform minimum dataset for cancer registry in Nigeria that will unified how dataset variables are collected and store which would enable the medical practitioners and other stakeholders view same information for better care using experts consensus. Methods Minimum dataset (MDS) was accessed from various registries across different countries using online databases; Pubmed, Proquest and Web of Sciences, a questionnaire was design in accordance with the research objective to ask for the experts view within the field in Nigeria to rate the items as “essential”, “useful but not essential”, or “not necessary” based on the importance of the data items and the possibility of having the require information available within Nigerian health context. Reliability measurement for the consistency, and Cronbach’s alpha is used according to the dataset different categories for content validity. Results A total of 63 data items were identified from various sources, ranging from minimum of 8 variables to 46 variables in single publication, with the average data items of 23 variables. All the 63 data items were included in the questionnaire to seek the experts view as declared above. Fourteen experts (finalist), which their demographic data are in (table 1) responded to the questions. The experts are selected based on their specialization in the field related to dealing with cancer registry in Nigeria. 36 variables (MDS) table 2 meet the satisfactory value of content validity analysis of 0.51 and above, having 14 finalists. Other variables were suggested by the finalists, those items includes; “types of registry”, “registry catchment area”, “traditional medication therapy (i.e. Bokas)”, which experts emphasized it essential, as stated that it is particularly important in Sub-Sahara Africa where increasing attention is being paid to traditional medicine as a valuable alternative to orthodox medicine, and another variable of if patient is using both “orthodox and unorthodox therapy”. Discussion Cancer registry operates at different level of protocols, depends on the availability of resources in the facility. Several frameworks related to cancer registry that addresses the basis of establishing registries are available. This study described the arrangement formation of MDS developed to serve for cancer registry in Nigeria. For the registry to be established, certain conditions must be in place. Those conditions includes; the “medical care and access to medical facilities,” where cases will be originated, reliable population records need to also be available. Since patients data are utilize from different sources in various form, therefore this requirements is of utmost require in ensuring consistent linkage between the data source and the registries. At last, having number of these criteria will determine the assessment of cancer cases, gives the authorities estimates on clinical outcome which will support policies and budget allocation. Keywords : Minimum dataset, Hospital-Based Cancer Registy, Nigeria

62 Designing Minimum Data Sets in Diabetes Population-based Registry

Fatemehi Ramezani1 Hamid Moghaddasi2 Zahra Kashi 3 1.Msc Health Information Technology, Diabetes Research Center, Mazandaran university of medical Sciences, Sari, Iran 2. Associate Professor, Health Information Management, Shaheed Beheshti University of Medical Sciences, Tehran, Iran. 3. Endocrine Specialist, Professor, Diabetes Research Center, Mazandaran university of medical Sciences, Sari, Iran Author's profile: Address: Mazandaran University of Medical Sciences, Mazandaran, Iran, Diabetes Research Center, Iran Email: [email protected] Introduction: Diabetes mellitus is one of the most commonly diagnosed diseases of metabolic disorders and is one of the most important health issues around the world. If it is not well controlled, it can lead to serious complications. Regarding the role of registry systems in managing diabetes data, the present study aimed to study the diabetes information elements as the basis for the effectiveness of diabetes management in selected countries (Italy, England and Denmark) and finally the presentation of the model. Materials and Methods: The present study was a descriptive-applied study. In this research, the set of information elements in selected countries was first performed using adaptive tables, determining the ways of sharing and differentiating the data set. Then, in the form of a questionnaire, using the Delphi technique, the opinions were taken from the experts. Pattern validation was done using descriptive statistics (absolute and relative frequency determination). Eventually, the data that got at least 75% and above the score was taken in the final model. Results: According to the results of research and studies in selected countries, diabetes data sets are: 1) demographic 2) medical history 3) evaluation and laboratory 4) outcome and complication data 5) follow-up data collection. These data from various data sources including the diagnostic database, the hospital discharge database, the laboratory, the database of prescription drugs, the outpatient clinic, the hospital registry, the registry of death, the data sources of general practitioners, internal and endocrine specialists, the system Disease Registration, Diabetes Association, Primary Health Care Centers, medical records, optometrists and ophthalmologists are collected and entered into diabetes registration systems. Conclusion: Diabetes mellitus is a chronic disease and patients have been involved with them for years. Implementation of the standard dataset in the registry can improve the quality of documentation, improve the care of diabetic patients and prevent complications associated with it. Keyword: Diabetes, Registration System, Information System Diabetes Dataset

63 11-13 December 2 0 1 8

Development and Psychometric Evaluation of Data Collection Tools for Iranian Integrated Road Traffic Injury Registry: Nursing Station Data Collection Tool

Soudabeh Marin1, Faramarz Pour asghar2, Alireza Moghisi3, Bahram Samadirad4, Mashyaneh Haddadi5, Davoud Khorasani-Zavareh6,Homayoun Sadeghi Bazargani7 1-MSc, Department of Biostatistics and Epidemiology, School of Health, Tabriz University 1.of Medical Sciences, Tabriz, Iran ([email protected] ) 2-MD, PHD, Road traffic injury research centre and Department of health service management, school of management and Medical informatics, Tabriz University of medical sciences, Tabriz, Iran. (pourasgharf@ tbzmed.ac.ir) 3-Injury Prevention and Safety Promotion Department, Disaster and Emergency Management Center, Ministry of Health and Medical Education, Tehran, Iran ([email protected]) 4-Forensic Medicine Research Centre, Legal Medicine Organization, Tabriz, Iran ([email protected]) 5-Injury Prevention and Safety Promotion Department, Disaster and Emergency Management Center, Ministry of Health and Medical Education, Tehran, Iran ([email protected]) 6-Safety Promotion and Injury Prevention Research Centre, Department of Health in Disaster and Emergency, Shahid Beheshti University of Medical Sciences, Tehran, Iran ([email protected]) 7-Road Traffic Injury Research Centre, Department of Statistics and Epidemiology, Tabriz University of Medical Sciences, Tabriz, Iran ([email protected]) (Correspondent Author)

Background: Road Traffic Injuries (RTIs) are the second leading cause of death in Iran. Comprehensive and accurate data is fundamentally needed for effective management of RTIs. Reliable and valid data collection tools are one of the necessities for road traffic management. The aim of this study was to develop and validate the nursing station data collection tool as a part of Iranian Integrated Road Traffic Injury Registry (IRTIR). Methods: A data collection tool was developed to be used by nurse staff for inpatient section of IRTIR by information retrieved through literature review and need assessment of road traffic experts. The content validity of the preliminary tool was assessed. To assess applicability of the tool, it was conducted in two referral injury hospitals. Intra- and inter-rater reliability of the tool was evaluated using the individual/Absolute Intra-class Correlation Coefficient (ICC) and Kappa. Validity was revisited after one year of the pilot study. Results: The Nursing Station data collection tool of IRTIR consisted of 53 items, divided in five categories. Content validity was approved (modified Content Validity Index was 0.8-1 and Content Validity Ratio was one for all items). ICC was above 0.6 for all items and kappa index ranging between 0.69 and 0.92. The nurse data collection tool of IRTIR was applicable in the pilot phase in Tabriz. Conclusions: The Nursing Station data collection tool of IRTIR was confirmed to be a valid and reliable tool for inpatient traffic injuries as a part of the Iranian Integrated Road Traffic Injury Registry.

Key words: Road traffic, Injury registry, Data collection tool, Validation

64 Designing and establishing an electronic registration system for prostatic biopsy

Mohammad Reza Nowroozi1, Solmaz Ohadian Moghadam2, Erfan Amini3, Seyed Ali Momeni4, Mohsen Ayati5, Hassan Jamshidian6, Laleh Sharifi7 1- Professor of Urology- Chairman of Uro-Oncology Research Center - Tehran University of Medical Sciences 2- Assistant professor of Uro-Oncology Research Center - Tehran University of Medical Sciences 3- Assistant professor of Uro-Oncology Research Center - Tehran University of Medical Sciences 4- Assistant professor of Uro-Oncology Research Center - Tehran University of Medical Sciences 5- Professor of Urology- Chairman of Uro-Oncology Research Center - Tehran University of Medical Sciences 6- Professor of Urology- Chairman of Uro-Oncology Research Center - Tehran University of Medical Sciences 7- Assistant professor of Uro-Oncology Research Center - Tehran University of Medical Sciences Abstract کانــر پروســتات از بیــاری هــای شــایع در بیــن مــردان مــی باشــد. متأســفانه علــی رغــم تحــوالت مثبــت بهداشــتی و درمانــی در کشــور، ارزیابــی دقیقــی از اهمیــت و گســرتدگی ایــن بیــاری وجــود نــدارد ولــی بررســی هــا نشــان دهنــده فراوانــی کانــر پروســتات و مــرگ و میــر ناشــی از آن در ایــران میباشــد. غربالگــری بــرای تشــخیص زودرس بــا بررســی ســطح رسمــی آنتــی ژن اختصاصــی پروســتات )PSA( و معاینــه رکتــال )DRE( انجــام میگیــرد. بــا طراحــی ســامانه ثبــت اطلعــات بیمرانــی کــه بــه دنبــال غربالگــری کانــر پروســتات تحــت بیوپســی قــرار میگیرنــد، ایــن امــکان فراهــم مــی شــود کــه اطلعــات ایــن بیــاران و ســیر بیــاری در آنهــا مــورد بررســی قــرار گیــرد و سیاســت هــای غربالگــری کانــر پروســتات کــه در کشــور هــای مختلــف و بســته بــه ماهیــت بیــاری در نــژاد هــای مختلــف متفــاوت اســت بازنگــری گــردد. از آنجــا کــه بســیاری از اطلعــات دموگرافیــک، ریســک فاکتــور هــای احتملــی، نتایــج پاتولــوژی و پیگیــری بیــاران در ایــن ســامانه ثبــت میگــردد، امــکان ارزیابــی فاکتــور هــای خطــر مرتبــط بــا بیــاری، میــزان aggressiveness بیــاری در کشــور و اثــر درمانهــای بــه کار رفتــه وجــود دارد. بنظــر میرســد طراحــی ســامانه ثبــت اطلعــات مبنظــور دریافــت اطلعــات کل بیمرانــی کــه بــا شــک بــه کانــر پروســتات تحــت بیوپســی قــرار میگیرنــد و پیگیــری ســیر ایــن بیــاران از اهمیــت قابــل توجهــی برخــوردار اســت و میتوانــد در مســائلی کــه controversy وجــود دارد از جملــه لــزوم تکــرار بیوپســی، ســن رشوع غربالگــری، لــزوم انجــام غربالگــری و.... کمــک کننــده باشــد. هــدف کلــی: راه انــدازی ســامانه الکرتونیکــی ثبــت اطلعــات بیوپســی پروســتات اهــداف اختصاصــی: 1- تعییــن تجهیــزات ســخت افــزاری بــرای راه انــدازی ســامانه الکرتونیکــی ثبــت اطلعــات بیوپســی پروســتات -2 تعییــن تجهیــزات نــرم افــزاری بــرای راه انــدازی ســامانه الکرتونیکــی ثبــت اطلعــات بیوپســی پروســتات. 3- تعییــن متغیرهــای رضوری بــرای ثبــت در ســامانه. 4- تعییــن فــرد مســؤول ثبــت اطلعــات در ســامانه. 5- تعییــن روش بررســی درســتی اطلعــات ثبــت شــده و کاهــش خطــا در ثبــت اطلعــات متغیرهــا. 6- تعییــن روش پشــتیبان گیــری از اطلعــات. اهــداف کاربــردی: 1- ایجــاد بســرتی مناســب بــرای انجــام مطالعــات مرتبــط بــا غربالگــری و تشــخیص کانــر پروســتات و بررســی هزینــه اثربخشــی آن در کشــور 2- بررســی ریســک فاکتورهــای مرتبــط بــا کانــر پروســتات در کشــور 3- انجــام مطالعــات و بررســی هــای اپیدمیولوژیــک مرتبــط بــا کانــر پروســتات روش اجــرا : اطلعــات بیمرانــی کــه جهــت انجــام بیوپســی پروســتات مراجعــه میکننــد در ســامانه الکرتونیکــی ثبــت میگــردد. در مرحلــه اول، متغیرهایــی کــه ثبــت آنهــا در ارتبــاط بــا بیــاران کاندیــد بیوپســی پروســتات رضورت دارد مشــخص و در مرحلــه دوم نــرم افــزار مربــوط بــه ثبــت اطلعــات بیوپســی پروســتات طراحــی میگــردد کــه از دســته نــرم افزارهــای تحــت وب بــوده و دسرتســی بــه بانکهــای اطلعاتــی از طریــق شــبکه اینرتنــت بــرای همــکاران پــروژه و بــا اســتفاده از نــام کاربــری و کلمــه عبــور فراهــم میباشــد. در ایــن ســامانه از کــد ملــی و در صــورت عــدم دسرتســی ترکیبــی از نــام، نــام خانوادگــی و شــاره پذیــرش بعنــوان شناســاگر بــرای پرهیــز از ثبــت رکوردهــای تکــراری بــه کار میــرود. در مرحلــه ســوم فرمهــای طراحــی شــده مربــوط بــه ثبــت اطلعــات بیــاران توســط پرســتار پذیــرش دهنــده و پزشــک انجــام دهنــده بیوپســی تکمیــل میگــردد. اطلعــات توســط منشــی آمــوزش دیــده از فرمهــا وارد ســامانه و اطلعــات تکمیلــی ماننــد نتایــج بررســیهای هیســتوپاتولوژیک پــس از آمــاده شــدن بــه ســامانه افــزوده میشــود.

Keywords : Database management systems; prostate cancer, Transrectal ultrasound guided (TRUS) biopsy; Registry

65 11-13 December 2 0 1 8

Survey of ICD codes presented for cardiac patient’s records in the HIS of Imam Ali heart and cardio vascular center in Kermanshah: 2017

Parisa Yousefi konjdar1, Ali Mohammadi2 1- [email protected] 2- [email protected] Abstract بررســی کدهــای ICD ارائــه شــده بــرای پرونــده بیــاران قلبــی بــا HIS مرکــز قلب¬وعــروق امام¬علــی)ع( کرمانشــاه: 1396 زمینــه: وجــود جمعیــت¬ جــوان و ورود آنهــا بــه ســن بــروز بیمریهای¬عروق¬کرونــر رضورت برنامهریــزی در ایــن زمینــه را می¬طلبــد بنابرایــن پیشــگیری و مدیریــت بیمریهــای قلب¬و¬عــروق نیاز¬بــه یــک ســامانه جامــع جهــت ثبــت داده دارد.کدهــایICD بــرای سیســتم¬های مراقبــت بهداشــتی حیاتــی هســتند و ســازمانهای متعــدد به¬دالیــل مختلــف از آنهــا اســتفاده می¬کننــد. لــذا باتوجه¬بــه ایــن موضــوع، ایــن تحقیــق بــه مقایســه کدهــایICD موجــود در پرونــده کاغــذی بــاHIS بیــاران قلبــی بســرتی شــده پرداخته¬اســت. روش¬هــا: پژوهــش کیفــی بــوده¬ و بــه صــورت توصیفــی- مقطعــی بــرروی پروندههــای بســرتی ســال 1396 انجــام شده¬اســت. محیــط پژوهــش بیمرســتان قلب¬وعــروق امام¬علــی)ع( شهرکرمانشــاه بــوده¬، منابــع پزوهــش تعــداد 14400 پرونــده بســرتی بیــاران قلبــی ترخیص¬شــده ســال1396بوده و منونه¬گیری¬احتملــی بــه¬روش تصادفی¬ســاده انجــام شده¬اســت. ابزارجمــع¬آوری دادههــا چکلیســت بــوده کــه روایــی محتوایــی آن با¬اســتفاده از نظر3متخصــص مدیریــت اطلعــات ســامت و3متخصــص کدگــذاری تعیین¬شده¬اســت. دادههــا توســط پژوهشــگران در چــک لیســت وارد شــده¬، تحلیــل دادههــای ثبت¬شــده بااســتفاده از نــرم افــزارSPSS انجام¬شــده¬ و در قالــب جــداول و منودارهای¬آمــاری ارائــه شده¬اســت. یافته¬هــا: در ایــن مطالعــه تعــداد پرونده¬هــای بررســی شــده 400مــورد بوده¬کــه پزشــک معالــج61 پرونــده غیرهیات¬علمــی و پزشــک معالــج339 پرونــده عضــو هیــات علمــی بــوده¬ کــه از بیــن آن¬هــا: پزشــک معالــج 232پرونــده اســتادیار، 96 پرونــده دانشــیار و11 پرونــده اســتاد بوده¬انــد. ازکدهــای بررســی شــده 24 مــورد مربوط¬بــه تشــخیص اولیــه و اقدامــات بــوده کــه در پرونــده بیــاران ثبــت شــده ولــی در HIS ثبــت نشــده¬بود. 919 مــورد از کدهــا در پرونــده بیــاران ثبــت نشــده درحالــی کــه در HIS ثبــت شــده بــود.40 مــورد اشــتباه در رقــم صحیــح و 17 مــورد در رقــم اعشــار کدهــای ثبــت شــده در HIS وجــود داشته¬اســت. بحــث و نتیجه¬گیــری: با¬توجــه بــه پژوهــش انجام¬شــده، بیشــرت خطاهــا مربــوط بــه نقــص اطلعــات در پرونده¬هــای کاغــذی منونه¬گیری-شــده بــود کــه بخشــی¬از ایــن نقایــص مربوط¬بــه پزشــک معالــج و عــدم ثبــت کامــل تشــخیص¬ها، بخــش دیگــر نقایــص مربــوط بــه کدگــذار و عــدم ثبــت کــد مربوط¬بــه تشــخیص¬ها در پرونــده بــود، همچنیــن قســمت عمــده خطاهــا مربوط¬بــه اطلعاتــی بودنــد کــه در پرونــده ناموجــود ولــی درHIS ثبــت شــده¬بودند و ایــن درحالــی اســت کــه بــرای بررســی صحــت اطلعــات وارد شــده درHIS نیازبــه موجــود بــودن اطلعــات در پرونده¬هــا می¬باشــد، در پژوهــش انجام¬شــده تعــداد کثیــری از پرونده¬هــا دارای ایــن خطاهــا بودنــد، بــرای کاهــش ایــن خطاهــا پزشــک معالــج و کدگــذار هریــک در حیطــه کار خــود بایــد نهایــت دقــت را داشته¬باشــند. واژههاي كليدي : نوع کد، خطای کدگذاری، سیستم اطلعات بیمرستان)HIS(

Survey of ICD codes presented for cardiac patient’s records in the HIS of Imam Ali heart and cardio vascular center in Kermanshah: 2017

66 غیرهیات¬علمــی و پزشــک معالــج339 پرونــده عضــو هیــات علمــی بــوده¬ کــه از بیــن آن¬هــا: پزشــک معالــج 232پرونــده اســتادیار، 96 پرونــده دانشــیار و11 پرونــده اســتاد بوده¬انــد. ازکدهــای بررســی شــده 24 مــورد مربوط¬بــه تشــخیص اولیــه و اقدامــات بــوده کــه در پرونــده بیــاران ثبــت شــده ولــی در HIS ثبــت نشــده¬بود. 919 مــورد از کدهــا در پرونــده بیــاران ثبــت نشــده درحالــی کــه در HIS ثبــت شــده بــود.40 مــورد اشــتباه در رقــم صحیــح و 17 مــورد در رقــم اعشــار کدهــای ثبــت شــده در HIS وجــود داشته¬اســت. بحــث و نتیجه¬گیــری: با¬توجــه بــه پژوهــش انجام¬شــده، بیشــرت خطاهــا مربــوط بــه نقــص اطلعــات در پرونده¬هــای کاغــذی منونه¬گیری-شــده بــود کــه بخشــی¬از ایــن نقایــص مربوط¬بــه پزشــک معالــج و عــدم ثبــت کامــل تشــخیص¬ها، بخــش دیگــر نقایــص مربــوط بــه کدگــذار و عــدم ثبــت کــد مربوط¬بــه تشــخیص¬ها در پرونــده بــود، همچنیــن قســمت عمــده خطاهــا مربوط¬بــه اطلعاتــی بودنــد کــه در پرونــده ناموجــود ولــی درHIS ثبــت شــده¬بودند و ایــن درحالــی اســت کــه بــرای بررســی صحــت اطلعــات وارد شــده در HIS نیازبــه موجــود بــودن اطلعــات در پرونده¬هــا می¬باشــد، در پژوهــش انجام¬شــده تعــداد کثیــری از پرونده¬هــا دارای ایــن خطاهــا بودنــد، بــرای کاهــش ایــن خطاهــا پزشــک معالــج و کدگــذار هریــک در حیطــه کار خــود بایــد نهایــت دقــت را داشته¬باشــند. واژههاي كليدي : نوع کد، خطای کدگذاری، سیستم اطلعات بیمرستان)HIS( eterminants and Causes of Maternal Mortality in Iran Based on ICD- MM: A Systematic Review

Rostam Zalvand1, Maryam Tajvar2, Abolghasem Pourreza3, Hadi Asheghi4 1- Department of Health Management and Economics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran. 2- Department of Health Management and Economics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran. 3- Department of Health Management and Economics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran. 4- Department of Health Management and Economics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran. Abstract Background: No systematic review has explored yet the causes of and factors associated with maternal mortality in the context of Iran. This study reviewed determinants of maternal mortalities and the causes during pregnancy, delivery and the puerperium using the International Classification of Diseases-Maternal Mortality, introduced by the World Health Organization. Methods: A systematic electronic search of all the studies that identified causes and/or determinants of maternal deaths in any part of Iran or in whole country were included, without any restriction in time or language of studies. To identify the studies a hand searching was also conducted, in addition to searching for the bibliographies of the included studies. Of the total 653 citations initially included, 29 articles including those that identified through hand searching met the inclusion criteria. The required data were extracted from the papers and summarized and grouped together and reported in the tables. Results: Of the 29 studies, published between 2003 and 2017 in Iran, 24 studies were cross-sectional. Overall, 4633 deaths were reviewed, of which 2673 cases (58%) included the data on the causes of death too. In total, according to the International Classification of Diseases-Maternal Mortality, 69.9%, 20.6%, and 5.2% of mortalities were due to direct, indirect, and unspecified causes respectively and causes in some of the studies (4.3%) were not clear. Of the direct causes of deaths, hemorrhage (30.7%), followed by hypertensive disorders (17.1%), and of indirect causes, circulatory system diseases (8.1%) were leading causes. A number of factors including gravidity, type of delivery, socio-economic status of mothers, locations of birth and death and receiving maternity care were found in the original studies as the most important determinant of maternal mortalities in Iran. Conclusions: This study, provided an updated summary of evidences on the causes and determinants of maternal death in Iran, which is critically important for development of interventions that reduce the burden of maternal mortality and morbidity. Keywords : Keywords: Maternal mortality, MMR, ICD-MM, Determinants of maternal mortality, Causes of maternal death, Iran, Systematic review

67 11-13 December 2 0 1 8

Factors Influencing Quality of Diagnostic codes in Inpatient Registry: A Qualitative Study

Nafiseh Hosseini1, KhalilKimiafar2, Kazem Zendehdel3, Saeed Eslami*4 1Department of Medical Informatics, Mashhad University of Medical Sciences, Mashhad, Iran, hoseinin951@ mums.ac.ir 2Department of Health Information Technology, Faculty of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran 3Deputy of Research, Cancer Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran, [email protected] 4Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran, [email protected]

Introduction: The use of different International Classification systems in registries is effective in increasing the quality of data. High data quality of diagnostic codes will obtain valuable information from the huge collected data. So, the purpose of this study is to extract the factors affecting the quality of diagnostic codes in an Inpatient Registry. Method: An online questionnaire was designed contained a basic question "What factors affecting accuracy of diagnostic codes?" As well as the demographic information and the participants' work experience. It was broadcasted through the social network and the website to be completed by Iranian coders. Also there was a description of how to complete the questionnaire and a discussion about coders’ opinions through the social network. Extracted themes were evaluated and labeled after cleaning the information using the Conventional Content Analysis by two researchers. Results: About 80 questionnaires were completed by Iranian coders with work experience between [1 -25] year. According to the findings, the factors affecting the quality of coding can be divided into three general themes including factors related to physicians, factors related to coders, and management and financial factors. Also coders factors are subdivided into categories of skills and training, process factors, and system problems. The factors related to physicians also include three categories of process barriers, awareness and importance, and workload. Conclusion: There is high variation in reported studies in the quality of the diagnostic codes, especially in digit 4 and 5. The results of this study indicate that in order to improve the quality of diagnostic codes, there should be a triangular viewpoint of this issue. Doctors’ documentation, hospital policy, and coders' skills should be considered. Keywords: Quality of diagnostic codes, Inpatient registry, Conventional content analysis *Corresponding author: Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran, [email protected]

68 Design and implementation of electronic data collection system: Experience of Mazandaran Population-Based Cancer Registry (MazPBCR)

Majid Yaghoubi Ashrafi1, Raziyesadat Mousavi2, Zainab Qazizadeh3, Meysam Ebra- himi4 1-General practitioner, Manager of Population-Based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran 2-Bachelor of health information technology, Population-based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran 3-PhD student of health information management, Population-based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran 4-Master of Science in Software Engineering, Statistics and Information Technology Management of Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran

Abstract Introduction: Data Management- an integrated system for collecting, pre-processing, storing, monitoring, reviewing and reporting on disease registration programs- determines the usability of data in meeting the goals of disease registration. Using electronic data collection systems has an important role in achieving these goals. Accordingly, population-based cancer registry center of Mazandaran University of Medical Sciences (MAZUMS) set up an electronic system for collection of cancer patients` data from all diagnostic and therapeutic centers throughout MAZUMS coverage area- Mazandaran province except Babol county- since April 2016. The purpose of this study was to evaluate the effect of this system on cancer registry processes. Method: After holding numerous meetings in order to determine the minimum data set (MDS) for Population-based cancer registration of MAZUMS, the first version of online cancer registration system designed in 2016, which was accessible by Internet or Intranet. Then, after 5 months of pilot phase by experts at cancer registry center, existing bugs detected and fixed. After holding up sessions for training pathology labs or hospital staff, these centers began to use only this system all over MAZUMS coverage area to send demographic data and diagnostic documents of cancer patients electronically to MAZUMS population–based cancer registry (MazPBCR). Finally, the system function‏ was evaluated by checking some qualitative indicators. Results: From August 2016 to November 2018, totally 14366 records were sent electronically to MazPBCR from 78 data centers including public and private pathology labs, medical record units, specialized clinics and oncology departments of governmental or non-governmental hospitals. By using this electronic system for registration, the time interval between the date of cancer diagnosis and date of sending diagnostic documents to MazPBCR decreased in comparison to the same time in the paper–based delivery system. Also, it was possible to daily monitoring the records in the system, so all defects and errors in documentation followed up and fixed within a shorter time in comparison to the paper–based system, which led to an increase in data quality. Conclusion: Using the electronic system for collecting data, enhanced data quality, reduced the time, decreased the costs and led to a better optimal management of work processes at the data center, as well as MazPBCR. Keywords: Electronic system, Cancer, Cancer registration

69 11-13 December 2 0 1 8

Use of mobile health technology in establishment of Multiple Sclerosis (MS) registry in Iran: A study of stakeholders’ attitude

Omid Beiki1, Leszek Stawiarz2, Sharareh Skandarieh3, Abdorreza Naser Moghadasi4, Mohamadali Sahraian5, Ali Manouchehrinia6 1- Karolinska Institutet, Stockholm, Sweden Email:[email protected] 2- Karolinska Institutet, Stockholm, Sweden 3- MS Research Center, Tehran University of Medical Sciences, Tehran, Iran 4- MS Research Center, Tehran University of Medical Sciences, Tehran, Iran 5- MS Research Center, Tehran University of Medical Sciences, Tehran, Iran 6- Karolinska Institutet, Stockholm, Sweden

Background: A system for registration of multiple sclerosis (MS) in Iran is in its beginning and the pilot phase already started in few places. To establish a functional and effective registry, it is essential to recognize and analyze the attitudes and perspectives of stakeholders. Such information is of a crucial importance in order to plan suitable strategies to motivate participation of stakeholders. Aim: To explore attitudes and opinions of patients and physicians toward using mobile applications for MS data registration in Iran. Methods: Study was performed in two phases. In the qualitative phase, which included focus group discussions (FGD) and interviews, we collected and analyzed the attitude and opinion of clinicians and patients on the usability, challenges, barriers and expectations from mobile applications for MS registry in Iran. Results of the first phase was used to design the questionnaire required for the second phase. In the second phase, a questionnaire was sent to 31 physicians active in the field of MS and 102 MS patients to quantify the challenges in use of smartphones. Results: Females constituted 84% of physicians and 71% of patients participated in questionnaire survey. Age ranged from 25 to 54 years in physicians and from 18 to 65 years in patients. The level of education for the patients ranged from illiterate (1%) to Master’s degree or higher (16%) with majority, having at least high school diploma (31%) or Bachelor degree (28%). We found that most of the patients and physicians own and have access to a smartphone, use them frequently, and majority stated enough confidence and comfortability in use of this technology. Physicians and patients’ views on most of the items (such as ambiguity in legal and regulatory affairs and not enough stability in decision making in healthcare system as barriers or saving time or decreasing cost as benefits) related to benefits, barriers, concerns and proposed characteristics were mainly in the same direction. However, we found significant differences in few items such as decrease inequalities in access to MS healthcare, and increase patients’ collaboration as benefits. Overall, more patients (87%) than physicians (58%) were agreed (strongly agree/agree) that it is possible to use mobile applications for MS registration in Iran and 32% of physicians compared to 8% of patients were not sure about it. Conclusion: We report the first qualitative (FGD and interviews) and quantitative study of stakeholder perspectives by providing important findings regarding MS patients and physicians’ views on the smartphone use in MS data collection in Iran. Our results were compatible, in many aspects such as ownership or access to, and usage frequency of smartphone and frequency of using applications designed for MS healthcare purposes, with results from other studies in high-income countries. Discrepancies found among respondents suggest MS patients, physicians and other stakeholders should be consulted thoroughly during the design phase of application to ensure those factors have appropriately been considered. Keywords: Multiple sclerosis, registries, mHealth, patients, physicians Keywords: : Multiple sclerosis, registries, mHealth, patients, physicians

70 The importance of geopraghical information sysytem (GIS) in registartion of Chest diseases

Parissa Farnia1, Hamid Reza Jammati2, Poopak Farnia3, Maryam Haddai4, Esmail Ra- jaei5, Jalaledin Ghanavi6, Ali Akbar Velayati7 1- Deputy Director of Resrach and Development , National Research Institute of Tuberculosis and Lung Disease (NRITLD), Shahid Beheshti University of Medical Sciences 2- Full professor of Chronic Respiratory Diseases Centre, National Research Institute of Tuberculosis and Lung Disease (NRITLD), Shahid Beheshti University of Medical Sciences, Tehran, Iran 3- Assistant prof of Department of Biotechnology, School of Advanced Technologies in Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran 4- Master degree of Mycobacteriology Research Centre (MRC), National Research Institute of Tuberculosis and Lung Disease (NRITLD), Shahid Beheshti University of Medical Sciences, Tehran, Iran. 5- Master degree of Mycobacteriology Research Centre (MRC), National Research Institute of Tuberculosis and Lung Disease (NRITLD), Shahid Beheshti University of Medical Sciences, Tehran, Iran. 6- Associate Prof of Mycobacteriology Research Centre (MRC), National Research Institute of Tuberculosis and Lung Disease (NRITLD), Shahid Beheshti University of Medical Sciences, Tehran, Iran. 7- Director of National Research Institute of Tuberculosis and Lung Disease (NRITLD), Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Abstract ســامانه اطلعــات جغرافیایــی یــا جــیآیاس) Geographic Information System - GIS( در ثبــت بیمریهــای قفســه صــدری بــا هــدف جمــع آوری، ذخیــره ســازی، بازیابــی، تجزیــه و تحلیــل و انتشــار اطلعــات افــراد مبتــا بــه بیمریهــای ریــوی از جملــه: ســل، بیمریهــای مزمــن انســداد ریــوی، رسطــان قفســه صــدری، ســارکوئیدوز، سیســتیک فیربوزیــس، پرفشــاری رشیــان ریــوی، بیمریهــای تنفســی کــودکان، ترومبــو آمبولــی وریــدی و بیمریهــای بینابینــی ریــه در مواجهــه بــا مــوارد شــناخته شــده و یــا مشــکوک بــه اثــرات نامطلــوب در یــک جمعیــت و گســرته جغرافیایــی مشــخص از تاریــخ خــرداد 1396 در بیمرســتان مســیح دانشــوری راه انــدازی شــد . از اهــداف اصلــی ایــن ســامانه بررســی بــروز و شــیوع بیــاری هــای ریــوی، ارزیابــی تاثیــرات رشایــط محیطــی و زیســت محیطــی، ارزیابــی تغییــرات زمانــی و مکانــی، توســعه و ارتقــاء تحقیقــات در علــوم بالیــن میباشــد. از آنجایــی کــه ســامت انســانها توســط عوامــل مختلــف محیطــی و از جملــه مــکان زندگــی آنــان تحــت تاثیــر قــرار مــی گیــرد بــه گونــه ای کــه مــی تــوان گفــت مســایل مربــوط بــه ســامت تقریبــاً همیشــه ابعــاد مکانــی دارنــد. بررســی خصوصیــات ایــن مکانهــا )از جملــه خصوصیــات مــردم شــناختی و وجــود عوامــل خطــر محیطــی(، بــه منظــور انجــام مطالعــات اپیدمیولوژیــک بســیار حایــز اهمیــت اســت. بــه طــور کلــی در حیطــه ســامت، از GIS بــه عنــوان یــک ابــزار کمکــی بســیار مفیــد اســتفاده مــی شــود کــه مــوارد ذیــل را میتــوان بــر شــمرد : ۱-بررســی و پیگیــری رونــد شــیوع و انتشــار بیمریهــای عفونــی ) ســل ، ایــدز و … ( و ســایر مســایل بهداشــتی در طــول دوره هــای زمانــی ۳- ارزیابــی خطــرات محیطــی ) Environmental Hazards ( و میــزان متــاس ) Exposure ( بــا مــواد آلــوده کننــده: بــا مــکان یابــی دقیــق توســط GIS مــی تــوان مناســب تریــن مــکان را کــه کمرتیــن آســیب زیســت محیطــی را وارد کنــد و بــرای ســاکنین یــک منطقــه دارای کمرتیــن خطرباشــد را بــرای احــداث یــک کارخانــه پیشــنهاد منــود. ۴- طراحــی و بهبــود سیســتم مراقبــت بیمریهــای ریــوی و تعییــن گروههــا و افــراد در معــرض خطــر: بــا GPS نــگاری مــکان زندگــی یــا تجمــع برخــی بیــاران خــاص از قبیــل بیــاران مبتــا بــه ســل و ایــدز یــا هپاتیــت مــی تــوان نقــاط دارای بیشــرتین فراوانــی را روی نقشــه ترســیم منــود و در برنامــه ریــزی هــای بهداشــتی آن را مــد نظــر قــرار داد . ۵- تخصیــص و توزیــع مکانــی منابــع ) بودجــه، نیــروی انســانی، تجهیــزات ( از طریــق ارزیابــی نیازهــای بهداشــتی منطقــه ای ۶- تشــخیص رسیــع اپیدمــی هــا و کنــرتل بــه موقــع آنهــا: بــا تعییــن مــکان ســکونت بیــاران مبتــا بــه هنــگام وقــوع یــک اپیدمــی مــی تــوان نحــوه گســ شرت آن بیــاری را پیــش بینــی منــوده و اقدامــات پیشــگیری کننــده را بــه مــکان هــای در معــرض خطــر اختصــاص داد. ۷- بهبــود سیســتم ثبــت بیمریهــا و وقایــع بهداشــتی) ثبــت رسطــان، ثبــت ســل ، ثبــت اســم .... ، میــزان مــرگ و میــر، پوشــش واکسیناســیون ۸- یافــن ارتبــاط بیــن عوامــل محیطــی و بــروز بعضــی بیمریهــای قفســه صــدری ) پژوهــش بهداشــتی- پزشــکی ( ۹ -بهبــود برنامــه هــای غربالگــری و پیگیریهــا از طریــق دســتیابی رسیــع تــر و آســان تــر بــه بیــاران ۱۰- ایجــاد یــک شــبکه ارتباطــی مناســب و کارا بیــن مراکــز و موسســات مختلــف بهداشــتی درمانــی ۱۱- پایــش و ارزشــیابی برنامــه هــا و مداخــات بهداشــتی و ارزیابــی کمیــت و کیفیــت خدمــات و میــزان دسرتســی مــردم بــه آنهــا ۱۲- بهبــود سیســتم آمــار و اطــاع رســانی و کمــک بــه تصمیــم گیــری مبتنــی بــر شــواهد و مســتندات ۱۳- پیــش بینــی بیمریهــای قفســه صــدری بــا اســتفاده از شــیوه هــای مــدل ســازی واژههاي كليدي : سامانه اطلعات جغرافیایی، بیمریهای قغسه صدری ؛ بیمرستان مسیح دانرشی

71 11-13 December 2 0 1 8

Information Security: An Important Challenge in the Disease Registry

Khalil Kimiafar1, Masoumeh Sarbaz2, Fereshteh Manouchehri Monazah3, Alireza Ban- aye Yazdipour4 1- Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected] 2- 2- Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected] 3- 3- Students Research Committee, Mashhad University of Medical Sciences, Mashhad, Iran 4- Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected] 4- 3- Students Research Committee, Mashhad University of Medical Sciences, Mashhad, Iran 4- Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran- [email protected] Abstract مقدمــه : رجیســرتی بیــاری هــا، یــک سیســتم ســازماندهی شــده اســت کــه بــا هــدف یــا اهــداف تعییــن شــده و بــا اســتفاده از روش هــای مطالعــات مشــاهده ای بــه جمــع آوری داده هــای بیــاران یــک بیــاری، رشایــط یــا مواجهــه خــاص مــی پــردازد. بــا توجــه بــه پیرشفــت فنــاوری اطلعــات و تولیــد روزافــزون اطلعــات در صنعــت بهداشــت و درمــان، توجــه بــه موضــوع امنیــت اطلعــات در رجیســ یرت هــا، امــری بســیار مهــم و چالــش برانگیــز مــی باشــد. لــذا، هــدف پژوهــش حــارض، بررســی امنیــت اطلعــات در رجیســرتی بیــاری هــا بــود. روش بررســی: ایــن پژوهــش بــه صــورت مــروری در ســال 1397 و از طریــق جســتجو در پایــگاه هــای اطلعاتــی معتــرب از قبیــل Web of Science، Scopus، PubMed، ScienceDirect و Google Scholar بــود کــه بــا کلیــدواژه هــای “Patient Registries”، “Security” و “Information Security” انجــام شــد. در نهایــت 32 مقالــه از ســال 2000 تــا 2018 پیــدا شــد کــه پــس از بررســی عنــوان، چکیــده و کلیــدواژه هــا، 18 مقالــه انتخاب گردید. ســپس مقاالت توســط پژوهشــگران بــه منظــور تحلیــل، مــورد بررســی قــرار گرفتنــد. یافتــه هــا: یافتــه هــای پژوهــش حــارض نشــان داد کــه یکــی از الزامــات بســیار مهــم در طراحــی و پیــاده ســازی رجیســرتی هــا، توجــه بــه موضوعــات امنیــت، حفــظ حریــم شــخصی و محرمانگــی اطلعــات بیــاران مــی باشــد. براســاس ایــن یافتــه هــا، بــرای حفــظ امنیــت و محرمانگــی اطلعــات موجــود در رجیســرتی هــا، بایــد تنهــا کاربــران مجــاز بــه اطلعــات ثبــتشــده دسرتســی داشــته باشــند و ســطح دسرتســی بــه اطلعــات بــا توجــه بــه اصــل نیــاز بــه دانســن تعییــن گــردد. اکــر رجیســرتی هــا در کشــورهای توســعه یافتــه بــرای محافظــت از اطلعــات موجــود از روش هــای رمزنــگاری، بــی نــام ســازی، روش هــای ممیــزی، زیرســاختار کلیــد عمومــی و مــواردی از ایــن قبیــل اســتفاده مــی کننــد تــا در هنــگام اســتفاده و تبــادل اطلعــات موجــود در رجیســرتی، نقضــی صــورت نگیــرد. آگاهــی کاربــران رجیســرتی هــا، یکــی از مــوارد بســیار مهــم در جهــت حفــظ امنیــت اطلعــات مــی باشــد. لــذا الزم اســت تــا آمــوزش هایــی در ایــن زمینــه ارائــه گــردد. نتیجــه گیــری: بــه طــور کلــی، در عــر امــروز کــه عــر انفجــار اطلعــات نامیــده مــی شــود و بــا توجــه بــه پیرشفــت فنــاوری اطلعــات، راهکارهــای مختلفی بــرای نقــض امنیــت و محرمانگــی اطلعــات شــکل گرفتــه اســت، توجــه بــه موضوعــات حفــظ حریــم شــخصی، محرمانگــی و امنیــت اطلعــات بیشــرت از دوران قبــل احســاس مــی شــود. بــا توجــه بــه اینکــه در ایــن زمینــه قوانیــن و مقــررات مشــخص و مدونــی وجــود نــدارد، لــذا الزم اســت تــا سیاســت گــزاران و مدیــران، دســتورالعمل هــا و قوانیــن مشــخصی را تدویــن مناینــد. واژههاي كليدي : کلیدواژه ها: رجیسرتی بیمری ها، امنیت اطلعات، محرمانگی اطلعات، حفظ حریم شخصی، بیمران.

The Role of IOT based Health Data record on Cognitive Disordered Elderly care

Parmis Asghari1, Sharareh Niyakan2, Shahram Tofigh3, Farhad Hariri4 1- MSc. Student of Medical Informatics, Tehran University of Medical Sciences, Tehran, Iran, Email: p-asghari@ razi.tums.ac.ir 2- Associate professor of Medical Informatics, Tehran University of Medical Sciences 3- Associate professor of Health Economics, Tehran University of Medical Sciences 4- 1- PhD. Student of biotechnology- bioinformatics, University of Ljubljana, Ljubljana, Slovenia. Email: F.hariri@ isti.ir Abstract In recent years, due to a rapid extension in the number of elderly people, many efforts have been made to develop systems to collect their data accurately and comprehensively. The number of elderly suffering from cognitive disorders such as Alzheimer is increasing. Cognitive disorders (CDs), also known as neurocognitive disorders (NCDs), are a category of mental health disorders that primarily affect cognitive

72 abilities including learning, memory, perception, and problem solving. Although, Elderly people prefer to live in their familiar environment where they can easily perform different activities of their daily life which is also good for their mental and physical well-being; however, cognitive disorders such as Alzheimer could affect elderly s and their care givers life adversely . In order to support them, Internet of Things (IOT) in which these days are called “Internet of Everything (IOE)”might be an effective solution.. Internet of Things is a mechanism that any object can communicate with other devices by many approaches like internet, Bluetooth, radio frequencies, etc. Also, they could be monitored, gathering, controlled, manipulated, sent data to a cloud- based on smart device, analyzing; the collected data finally might get better result for taking the best treatment depending on the patient s condition and the stage of the disease. In this research, a systematic literature review was conducted an approved search strategy developed and used in five different databases including Scopus, IEEE Explore, Science Direct, Web of Science, and Google scholar. 115 related papers in 5 recent years were identified. After applying inclusion and exclusion criteria, 25 articles finally were obtained. The result of this study according to the articles, which have been studied, shows that Internet of Things could be used for patients who have been suffering from the CDs practically and the advantages of using this useful technology such as, With dedicated sensors vital signs are recorded and, transmitted, Precautions for controlling the time, amount and correct way of taking the drug, also with fall detection sensors and other home sensors caring of elderly people could be easier than before. Other advantages are; Knowing the exact quantity of supplies or the air quality in and providing more information that could not have previously been collected from aged people home environment. the amount of saved time works efferently in emergency situation. And finally The biggest advantage of IoT is saving money for these kind of patients. The thing in IOT has no limitation for each object and they can be applied for any living or non-living objects in day to day life In order to develop efficient application for gathering data of elderly people like these patients, who might have cognitive disorders (CDs), the internet of things (IOT) technology inevitably can be applied for this target. Keywords : Key words: Cognitive disorders (CDs), Internet of Everything (IOE), , Old adult, Elderly, internet of things

Application of Mobile Phone on Registration System

Zahra Arabkermani,

Specialty PhD Student of Health Information Management at Health Human Resources Research Center, School of Management & Information Sciences, Shiraz University of Medical Sciences, Shiraz, Iran Email: [email protected]

Introduction: Nowadays application of technologies related to mobile phone and registration system are playing significant role for improving quality and on-time evaluating public health programs. The purpose of this study, is examining the status of using mobile phone on registration systems. Work Method: The present research is library research through benefiting from following websites: ProQuest, PubMed, Google Scholar, Scopus, Science Direct and by searching English and Persian words related to mobile health, registration system, public health, mobile technology. The related English references are related to the years 2012 to 2017 and the Persian references are related to the year 2013 to 2017. Findings: Mobile based registration systems due to having ability of using standard data, data exchange in on-line environment, using GPS system, sharing information to subscribers for protecting health, elimination of impediments related to time and place of offering services, offering required on-line information through solving related challenges to being sure of privacy issues of data, receiving confirmation of service receivers, attention to information literacy of people and easy access to these technology are easily accepted at registration system of public heath Conclusion: Emergence and evolution of mobile based technology in the field of public health creates significant opportunities for eliminating available gaps and problems in information registration systems. Key Words: Registration System, Mobile Based Technologies, Public Health, Information Literacy

73 11-13 December 2 0 1 8

Developing online data collection tool for population-based cancer registries: the new experience of Golestan, Iran

Susan Hasanpour-Heidari1, Ali Ahmadi2, Abdolreza Fazel3, SeyedMohsen Mansuri4, Amin Qorbani5, Gholamreza Roshandel6 1- Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran 2- Department of IT, Sayyad Shirazi hospital, Golestan University of Medical Sciences, Gorgan, Iran 3- Omid Cancer Research Center, Omid Preventive Medicine and Health Promotion Center, Golestan University of Medical Sciences, Gorgan, Iran 4- Statistics and Information Technology office, Golestan University of Medical Sciences, Gorgan, Iran 5- Department of IT, Sayyad Shirazi hospital, Golestan University of Medical Sciences, Gorgan, Iran 6- Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran Abstract Introduction: High quality data on cancer incidence and survival are crucial. Golestan Population- based Cancer Registry (GPCR) in Golestan province of Northern Iran provides reliable cancer statistics in order to control cancer in this high-risk area since 2004. The Cancer Data Collection and Processing (CanDCaP) software has been developed by the GPCR secretariat, in order to facilitate electronic data collection from different data sources. In this paper we will present specifications on the CanDCap and its effects on GPCR data quality. Methods: CanDCap was developed by GPCR to collect online cancer data from related data sources. CanDCap has two platform to its users. The web-based platform is designed for end-users from different sources (pathology centers, hospitals, …) to register cancer data, and windows-based platform is used by GPCR secretariat in order to do initial processing of registered data including coding of patients information as well as tumor characteristics. Processed data are transferred to CanReg software through accepted format for quality control and analysis. Results: GPCR has started data collection using CanDCap since 2017. All pathology centers (39 centers) in Golestan created their own accounts in CanDCap and started data entry in early 2017. Overall, 1793 new cancer cases were registered in the CanDCap by the end of October 2018. 1113 cases were registered in 2017 and the remaining 680 were reported in 2018. According to data, 865 cases are men and 928 cases are women and mean age of patients is 53 years. The proportion of records with accurate data on national ID, father name, address and telephone number were 88%, 82%, 95% and 97%, respectively. Conclusion: CanDCap has improved data collection process toward timeless and high-quality cancer data in comparison with traditional paper-based process. Our results showed considerable improving in proportion of records with accurate data on optional items compared with manually collected data of previous years. Keywords : Cancer, Data collection, Online System, Golestan, Iran

74 Integrated web-based registration of cardiovascular disease inpa- tients and outpatients in Yazd province, an introduction for EHR( electronic health record) Hamid Reza Dehghan, Seyed Hadi Ghasemi Zavieh Sadat, Seyedeh Mahdieh Na- mayandeh, Mohammad Hosein Soltani, Leila Hadiani, Abbas Andishmand, Ali Pedar- zadeh, Seyed Mostafa Seyed Hosseini, Mohamad Hosien Abdollahi. Yazd cardiovascular research center, yazd university of medical sciences, Medical informatics department, mashahd medical university.

Corresponded author: seyedeh mahdieh namayandeh MD PhD, epidemiologist. yazd cardiovascular research center, [email protected] Introduction : Ischemic heart disease is the cause of death and years of lost life in most countries in the world and in Iran. The design and deployment of registry systems with the goal of improving patient care, research, access to patients' previous records for their better treatment, and obtaining a reliable index of heart disease requires facilities and financial resources, and manpower and heavy equipment. The best way to deploy such a system is to design and develop these systems in line with current treatment plans. In this regard, the Yazd Cardiovascular Research Center, at the request of the Department of Health and Medical Education, was commissioned to design and establish a registry of ischemic heart disease in the province. This paper presents the second report of the design and implementation process of the integrated registry of ischemic heart disease leading to outpatient and pre-emergent outpatient settings for monitoring heart health and primary prevention to the level of cardiac rehabilitation, namely, Tertiary HealthCare in Yazd province. This approach has led to the establishment of a cardiac follow-up clinic and the provision of data registration services integrated in the primary prevention clinic Integrated Registration System for Cardiovascular Events and Processors: An integrated approach to the registering of ischemic heart disease has been designed to provide all patients with a follow-up clinic for up to 5 years in this phase and, if continued, until the end of their life. In Afshar Hospital as the first health promotion hospital in Yazd province, the family of patients admitted to the Clinic for Primary Prevention of Heart Disease. All of the information of an individual can be interconnected from the time the prevention clinic has entered data into the integrated registry system for any reason, as long as disease occurrence or diagnostic or therapeutic procedure is advised. Patient care summary can also be displayed on the physician's mobile phone. Patient's referral can be used for better patient care, and the same information is added to patient data. This expandable, integrated system for self-care helps patients to monitor their risk factors. Organizational and personnel structure of the integrated registry system : The Chief Officer: An epidemiologist who designs and directs a registry project and manages all types of registries from design to implementation.

75 11-13 December 2 0 1 8

Feasibility study of electronic data exchange between two registries of National Spinal Cord Injury and National Trauma

Mohammad Poursalehian1, Zahra Azadmanjir1, Khatereh Naghdi1, Mahdi Sharif-Al- hoseini1, Saeed Nezareh1, Peyman Salamati1, Vafa Rahimi_Movaghar1 1- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran

Abstract امــکان ســنجی اولیــه تبــادل داده الکرتونیــک بیــن دو ثبــت ملــی آســیب نخاعــی و ترومــا محمــد پورصالحیــان1، زهراســادات آزادمنجیــر1، خاطــره نقدی1، مهــدی رشیف الحســینی1، ســعید نظــاره1، پیــان ســامتی1، محمدرضــا ظفرقنــدی1، وفــا رحیمــی موقــر*1 1- مرکــز تحقیقــات ترومــا و جراحــی ســینا، دانشــگاه علــوم پزشــکی تهــران، تهــران مقدمــه و رضورت پژوهــش: تبــادل داده و هــم کنــش پذیــری بیــن سیســتم هــای موجــود در نظــام ســامت از جملــه سیســتم هــای ثبــت، تــا حــد زیــادی موجــب کاهــش هزینــه هــا و بــارکاری ناشــی از ثبــت داده هــای تکــراری و افزایــش قابلیــت اســتفاده مجــدد داده هــا خواهــد شــد.از آنجــا کــه بخشــی از جمعیــت هــدف ثبــت ملــی ترومــا، جمعیــت هــدف ثبــت ملــی آســیب نخاعــی را تشــکیل مــی دهــد، ایــن دو برنامه ثبــت مــی تواننــد از طریــق تبــادل داده، فراینــد جمــع آوری و ورود داده را تســهیل و کــمهزینــه تــر مناینــد. بدیــن منظــور، پیــش از هــر اقدامــی بــرای برقــراری امــکان ارتبــاط الکرتونیــک بیــن ســامانه هــای مــورد اســتفاده ایــن دو پــروژه، انجــام یــک مطالعــه امــکان ســنجی بــرای تعییــن وضعیــت پیــش نیازهــای تبــادل داده )شــامل درصــد داده هــای مشــرتک، همســانی مــدل اطلعاتــی دو ثبــت یــا ســاختار و مفاهیــم داده هــا، میــزان بیــاران مشــرتک( و چالــش هــای موجــود در انتخــاب بهرتیــن شناســه بــرای تطبیــق خــودکار بیــاران توســط ســامانه هــا در ایــن مســیر رضوری بــه نظــر رســید. روش پژوهــش: فــرم هــای ثبــت هــر دو برنامــه بــه منظــور تعییــن عنارصاطلعاتــی مشــرتک از بعــد مفهومــی و ســاختاری مــورد بررســی قــرار گرفتنــد. ســپس منونــه ای از اطلعــات ثبــت شــده بیــاران مراجعــه کننــده بــه 4 بیمرســتان مشــرتک بیــن ثبــت ترومــا و ثبــت نخــاع شــامل بیمرســتان هــای ســینا تهــران، شهیدبهشــتی کاشــان، شــهید رهنمــون یــزد و امــام خمینــی ارومیــه کــه بــازه زمانــی انجــام ثبــت در آنهــا همپوشــانی داشــت، بصــورت فایــل اکســل اســتخراج، بــا هــم مقایســه و تطبیــق داده شــدند تــا تعــداد بیــاران مشــرتک ثبــت شــده از طریــق آنهــا، مشــخص گــردد. بیــاران مشــرتک بــا اســتفاده از افزونــه AbleBits اکســل براســاس هــر کــدام از شناســه هــای کدملــی، کدپذیــرش، شــاره پرونــده و شــاره تلفــن همــراه رکوردهــای تکــراری )بیــاران( بیــن فایــل هــای اکســل شناســایی شــدند. ســپس نتایــج بــرای تعییــن میــزان همســانی موردیابــی و تعییــن بهرتین شناســه بــرای تطابق بیــاران مــورد تجزیه و تحلیل قــرار گرفــت. یافته هــا: از مجمــوع 291 عنص اطلعاتــی موجــود در ثبــت نخــاع، 71/ %23 عنــارص اطلعاتــی مشــرتک مــی باشــند. 55/18 % هــم از نظــر معنایــی و هــم از نظــر ســاختاری بــا ثبــت ترومــا مشــرتک هســتند، از مجمــوع 104 عنــر اطلعاتــی موجــود در ثبــت ترومــا، 34/66% بــا عنــارص اطلعاتــی ثبــت نخاعــی مشــرتک مــی باشــند امــا تنهــا 9/51% عنــارص داده ای هــم ازنظــر معنایــی و هــم از نظــر ســاختاری مشــابه هســتند. 75% اطلعــات هویتــی، 7/72% اطلعــات پیــش بیمرســتانی، 60% اطلعــات اورژانــس، 7% اطلعــات مداخــات و 50% اطلعــات مربــوط بــه ترخیــص بیــاران در ثبــت ملــی نخــاع بــا ثبــت ملــی ترومــا هــم از نظــر معنایــی و هــم از نظــر ســاختاری مشــرتک و همســان مــی باشــد. بیــن عنــارص اطلعاتــی مربــوط بــه تشــخیص آســیب و همچنیــن عــوارض بیــار در ثبــت ترومــا و نخــاع هیچ اشــرتاکی وجود نــدارد. یکــی از مهمرتیــن مزیت هــای ارتباط ثبــت ملــی آســیب نخاعــی بــا ثبــت ترومــا، فراهــم شــدن امــکان اطــاع از آســیب هــای همــراه بیــاران بطــور دقیــق و براســاس اســتاندارد AIS مــی باشــد. از آنجــا کــه تقریبــا هــر نــوع آســیب بــه غیــر از ســوختگی از طریــق ثبــت ترومــا مشــخص مــی گــردد، اطلعــات اختصاصــی تــر مــورد نیــاز ثبــت نخاعــی دربــاره آســیب هــای همــراه کــه تنهــا از طریــق یــک عنــر اطلعاتــی در ثبــت نخــاع دربــاره بیــار جمــع آوری مــی گــردد، قابــل بازیابــی خواهد بــود. بــازه زمانی مشــرتک ثبت بیــاران در بیمرســتان ســینا 03/05/95 تــا 30/06/96 بــود. 65 بیــار در ایــن بــازه زمانــی توســط ثبــت نخــاع شناســایی شــده بــود درحالــی کــه تنهــا 45 نفــر از آنهــا در ثبت تروما شناســایی شــده شــده بودنــد. 39 نفــر دارای کدملــی همســان و 6 بیــار فاقــد کــد ملــی بودنــد. 41 نفــر براســاس کدپذیــرش و 37 نفــر براســاس شــاره پرونــده و 25 نفــر براســاس شــاره تلفــن همــراه مشــرتک یافــت شــدند. بــازه زمانــی مشــرتک بیــاران در بیمرســتان شــهید بهشــتی کاشــان 26/04/96 تــا 18/12/96 بــود. 47 بیــار در ایــن بازه زمانی توســط ثبــت نخــاع شناســایی شــده بــود درحالــی کــه تنهــا 36 نفــر از آنهــا در ثبــت ترومــا شناســایی شــده بودنــد. 31 نفــر دارای کدملــی همســان و 6 بیــار فاقد کد ملــی بودند. 17 نفــر براســاس کدپذیــرش و 17 نفــر براســاس شــاره پرونــده و 35 نفــر براســاس شــاره تلفــن همــراه مشــرتک یافــت شــدند. بــازه زمانی مشــرتک بیــاران در بیمرســتان امــام خمینــی ارومیــه 23/07/96 تــا 30/11/96 بــود. درحالــی کــه 50 بیــار توســط ثبــت نخــاع شناســایی شــده بودند هیچ بیمری با آســیب ســتون فقــرات در ثبــت تروما شناســایی نشــده بــود. در بیمرســتان رهنمــون یــزد نیــز کــه بازه زمانــی مشــرتک بیــاران 2/09/96 تــا 28/01/97 بود، باوجــود اینکه 30 بیــار از طریق ثبت نخاع شناســایی شــده بودنــد هیــچ بیــاری بــا آســیب ســتون فقــرات در ثبــت ترومــا یافــت نشــده بــود. الزم بــه توضیــح اســت کــه ممکــن اســت علــت ایــن امــر، تاخیــر در ورود داده هــای مــوارد شناســایی شــده توســط ثبــت ترومــا بــه ســامانه باشــد. نتیجــه گیــری: اگرچــه امــکان تبــادل داده بخشــی زیــادی از داده هــای هویتــی، پیــش بیمرســتانی و حتــیاورژانــس بیــاران ترومایــیازســامانه ثبــت ترومــابــه ســامانه ثبــتآســیب نخاعــیوجــود دارد اما الزم اســت تــا راهکارهای مناســبی بــرای افزایش رسعت و پوشــش موردیابــی و ورود داده آســیب نخاعــی توســط ثبــت ترومــا اتخــاذ منــود. همچنیــن براســاس یافتــه هــای پژوهــش، مناســب تریــن شناســه بــه همــراه نــام و نــام خانوادگــی بــرای تطبیــق بیــاران، کــد ملــی بــوده و درصورتــی کــه اصــول مشــخص و مشــرتکی بــرای بیــاران غیرایرانــی تعییــن گــردد، مشــکلت ناشــی از عــدم ثبــت کدملــی نیــز برطــرف خواهــد شــد. بعــاوه چنانچــه امــکان یکســان ســازی ســاختار داده هــای مشــرتک از نظــر مفهومــی بیــن دو برنامــه نیــز فراهــم گــردد، ســهم بیشــرتی از داده هــا بیــن دو سیســتم قابــل تبــادل خواهــد بــود. بــا ایــن وجــود، انجــام یــک مطالعــه دیگــر بــا هــدف تعییــن میــزان همســانی مقادیــر عنــارص داده ای مشــرتک در بیــاران مشــ کرت یافــت شــده بیــن دو ثبــت و حتــی مقایســه صحــت آن داده هــا بــه تصمیــم گیــری دربــاره امــکان تبــادل داده بیــن دو ثبــت کمــک خواهــد منــود. واژههاي كليدي : آسیب نخاعی ، تبادل الکرتونیک داده ، تروما ، ثبت بیمری ، هم کنش پذیری

76 The Design Importance and Necessity of Student’s Electronic Health Information System (Narrative Review)

Honarmand kaveh1, paknejad azad2, naderi yaghoub3 1.M.Sc. Health Information Technology Department, Dr. Gholipour Hospital, Urmia University of Medical Sciences, Boukan, Iran. [email protected] 2.PHD student’s in knowledge and information science (KIS), University of MASHHAD, Iran. [email protected] 3. PHD student of Nursing, Iran University of Medical Sciences, Iran.

Abstract Background: Nowadays, quick access to comprehensive health records is an important step in providing care services and reducing costs. Student’s health information in schools, based on current health care programs, generates a large amount of care information. Therefore, the purpose of this study was to evaluate the importance of the student information system and its role in the student’s health in future. Method: This was Narrative Review study. Resources were retrieved through databases: Science Direct, PubMed ProQuest, Magiran, SID and Irandoc, as well as the Google scholar search engine. Articles from 2002 to 2016 entered the study. Study were conducted using the key words, Student’s health record, school’s health information system, Schools Health Record, in English and Persian. Results: Findings highlighted the importance and benefits of technology for quick access to health data in all organizations. But electronic health information systems are not available in schools, and the traditional paper documentation of student’s health information can take a lot of space and make the referral difficult. Conclusion: The existence of a student electronic health record system in schools will have an effective role on completing the electronic health record (EHR) and helping school health educators manage health care in schools. Key word: Schools Health Record, Health Information System, Student’s Health Record

77 11-13 December 2 0 1 8

Factors Influencing Quality of Diagnostic Documentation in Inpatient Registry: A Concept Mapping Approach

Nafiseh Hosseini1, Kazem Zendehdel2, Saeed Eslami*3

1Department of Medical Informatics, Mashhad University of Medical Sciences, Mashhad, Iran, hoseinin951@ mums.ac.ir 2Deputy of Research, Cancer Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran, [email protected] 3Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran, [email protected] Abstract Introduction: Inpatient Registry covers a wide range of hospitalized patients with different diagnoses. The final diagnosis of patient records is the most important field in Inpatient Registry. The ICD-10 based codes are assigned to inpatient records’ diagnosis used in decision making and surveillance researches. Do not attend to ICD-10 guideline can undermine the quality of an Inpatient Registry data. The objective of this study was to investigate the causes of doctors' non-adherence of the ICD-10 guideline in order to improve the quality of the final diagnosis documentation in an Inpatient Registry. Method: Concept mapping approach was used to assess different reasons of physicians’ non- adherence of ICD-10 guideline. This mixed method (quantitative and qualitative method) consists of 5 stages. Firstly, the research team designed the main question "What are the reasons of physicians’ non-adherence of the ICD-10 guideline?" Then, at a brainstorming session participants (physicians and experts) generated a list of ideas responding to the focus prompt developed in Stage 1. Extracted statements were cleaned that means duplicate and redundant statements were removed and overlapping statements was synthesized. Stage3: In the next session the extracted comments were sorted and categorized by participants. Also, a title was assigned to every structured category. Analyzing and interpretation were stage 4 and 5. To analyze and compute maps, the Mulita Dimensional Scaling (MDS) and Hierarchical clustering were used in SPSS. Interpreting the results and determining the importance of each problem was done by policymakers and the project researchers. Results: About 70 specialists by 14 different skills (such as Gynecologic, skin, heart, lung, etc.) participated in the brainstorming and sorting Sessions. Participants’ work experience was in the range of 1 to 49 years. 35 statements were extracted from brainstorming session divided into 6 categories. The titles of these categories are as follows: 1. No awareness, proper education, and knowledge of the importance of the issue. 2. Non-monitoring (management and financial factors), 3. Workload barriers, 4. Clinical problems (treatment and diagnosis problems), 5. System and process barriers, 6. Medical staffs’ barriers. Conclusion: The quality of the final diagnosis filed in Inpatient registry is directly related to doctors’ documentation. So it seems that the lack of awareness of the physicians about the ICD-10 guideline and the lack of attention of policymakers to establish effective rules are the most important reasons for the lack of physicians’ adherence of ICD-10 guideline. It is a threat to the quality of the Inpatient Registry data. Keywords: Inpatient Registry, Final Diagnosis, Data Quality, Concept Mapping *Corresponding author: Department of Medical Informatics, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran, [email protected]

78 Study on challenges of quality control in disease registry by clinical coding

Kioumars chelongar1, sakine Saghaeiannejad isfahani2 1- Student research committee. Isfahan University of medical sciences. [email protected] 2- Isfahan University of medical sciences. [email protected] Abstract Introduction: In the process of clinical coding, some clinical information for patients converted into code. Coded data helps health care centers manage disease quality, plan, manage information and reimburse health care costs. The modernization of the health system requires that medical activities, such as disease registration, moved to quality standards. Quality coding is an important element in controlling the quality of disease registration. Analysis method: This research is a review study conducted in 2018 by searching English articles in the Google Scholar, SID, Magiran, Science Direct, PubMed databases by reviewing the keywords in the MeSH Glossary. The total retrieval of all articles in search bases was 6761 articles. After restricting and reviewing the contents of the title, method, discussion, and the ratio of the year of publication of related articles, 43 articles were retrieved in Persian and English and retrieved in Finally, 5 Persian articles and 5 related English articles were selected and reviewed. Findings: In the health system, there are clinical systems with user interfaces and different coding systems. One of the problems encoding to improve the quality control in disease registration can be the lack of proper technical structures and barriers in organizational structure, the lack of attention of doctors to the importance of coding and neglecting the documentation. Conclusion: Some of the barriers are within the scope of quality control of health information management because of inadequate source documentation, the lack of integration of information from conventional computer programming and software logic, or lack of appropriate technical structures and organizational factors, including problems of control and quality improvement. Registration of diseases. In order to improve quality control, it recommended using computer technology and automatic coding of medical diagnoses and practices. In addition, training courses for coders in the field of training new changes resulting from the updating of books and rules related to seasons and for doctors to train the recording of reports. Keywords: clinical coding, coding quality, Disease registration, quality control

79 11-13 December 2 0 1 8

National Spinal Cord Injury Registry of Iran (NSCIR-IR), a Critical Appraisal of its Strengths and Weaknesses

Khatereh Naghdi1, Melika Khaleghi-Nekou2, Mahdi Sharif-Alhoseini3, zahra Azad- manjir4, Zahra Ghodsi5, Vafa Rahimi-Movaghar6 1- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, [email protected] 2- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, [email protected] 3- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, [email protected] 4- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, [email protected] 5- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, [email protected] 6- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, [email protected] Abstract برنامــه ثبــت ملــی آســیب نخاعــی ایــران، یــک مطالعــه آینــده نگر و بیمرســتان محور اســت که جهــت حمیــت از بیمران آســیب نخاعــی و با پشــتیبانی وزارت بهداشــت، درمــان و آمــوزش پزشــکی ایــران از ســال1394راه انــدازی شــده اســت. ایــن برنامــه، کیفیــت مراقبــت، عــوارض طوالنــی مــدت و بــار اقتصــادی، شــخصی و روانــی اســیب نخــاع در ایــران را براســاس بســرتی بیــار در بیمرســتان ارزیابــی مــی کنــد و تــا کنــون در 8 مرکــز دانشــگاهی ترومــا بــه اجــرا درآمــده اســت. طــی مطالعــه ای بــا مــاک قرار دادن Methodological guidelines and recommendations for efficient and rational governance of patient registries بــه عنــوان یــک گایدالیــن معتــرب بیــن املللــی جهــت اعتبــار ســنجی و تعییــن نقــاط قــوت و ضعــف بــه ارزیابــی ابعــاد مختلــف برنامــه پرداختــه شــد. نتایــج این مطالعــه بــرای ارتقــای کیفــی برنامــه در 4 محور زیــر خلصــه مــی شــود: 1. راهــربی: یــک مدیریــت راهــربی مناســب همــواره چهارچــوب رجیســرتی را تعییــن، از اجــرای آن حمیــت، و کیفیــت آن را تضمیــن مــی کنــد. اجــزای اختصاصــی مربــوط بــه راهــربی برنامــه بــه ایــن ترتیــب مــی باشــد: 1.1 فرایندهــا و روش هــا: اگرچه کمیته راهــربی برنامه، اســرتاتژی هــای پایــه را برنامه ریــزی کرده بــود،الزم اســت اهــداف فرعــی و کلیــه فراینــد هــای رجیســرتی بــه طــور دقیــق تدویــن شــوند. 1.2 آمــوزش: کارکنــان رجیســرتی همگــی پرســتاران اختصاصــی هســتند کــه جهــت پروتــکل و فرایندهــای رجیســرتی بیــاران آمــوزش دیــده انــد. بازآمــوزی دوره ای بــرای حفــظ و توســعه مهــارت هــای بــه روز شــده بــرای مدیریــت بهــرت رجیســرتی رضوری اســت. 1.3 برنامــه ریــزی منابــع و حمیــت هــای مالــی: مــی تــوان از حمیــت ســازمان هــای بیــن املللــی ماننــد ســازمان بهداشــت جهانی، موسســه AO، موسســات پرســتاری و توانبخشــی، صنایــع پزشــکی و رشکــت هــای بیمــه جهــت ارتقــا و گســ شرت برنامــه اســتفاده منــود. 1.4 قابلیــت همــکاری: همکاری بــا ســایر مراکــز و ارگان هایی کــه بــه اطلعــات بیــاران نخاعــیدسرتســی دارنــد از عنــارص کلیــدی اســت کــه در تبــادل اطلعــات کمــک مــی کنــد. 1.5 خــود ارزیابــی: شــورای راهربی و دســت انــدرکاران اصلــی رجیســرتی بایــد زمینــه خودارزیابــی و پایــش برنامــه را در دوره هــای زمانــی مشــخص فراهــم کننــد. 2. کیفیــت داده: جهــت اطمینــان از جمــع آوری داده بــا کیفیت بــاال، هفــت عنــر مهــم شــامل کامــل بــودن، صحــت و دقــت، درســتی، پیوســتگی، ســازگاری و روزامــدی، بایــد مــورد توجــه باشــند. 3. اطلعــات: اطلعــات، خروجــی اصلــی برنامــه اســت کــه بایــد بــا کیفیتــی قابــل قبــول و براســاس اهــداف رجیســ ی رت درقالــبنرشیــات علمــی یا گــزارش بــه سیاســت گزاران بهداشــتی کشــور منترش شــود. 4. مســائل اخلقــی: جنبــه هــای اخلقــی توســط کمیتــه اخــاق مرکــز تحقیقــات ترومــا و جراحــی ســینا، مــورد تصویــب واقــع شــده بود. واژههاي كليدي : آسیب نخاعی، ثبت، اطلعات پزشکی، ارتقای کیفی Data set validity & reliability of multiple sclerosis registry system in Iran

Sharareh Eskandarieh1, Moghadasi Abdorreza Naser2, Razazian Nazanin3, Seyed Mo- hammad Baghbanian4, Fereshteh Ashtari5, Asghar Bayati6, Mohammad Ali Sahraian7 1- MS Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran 2- MS Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran 3- Department of Neurology, Imam Reza Hospital, College of Medicine, Kermanshah University of Medical Sciences, Kermanshah 4- Assistant Professor, Clinical Neurology, Multiple Sclerosis Fellowship Bualicina Hospital, Neurology Department Mazandaran University of Medical Sciences 5- Associate Professor, Isfahan neurosciences research center, Alzahra Hospital, Department of Neurology, Isfahan University of Medical Sciences, Isfahan, Iran 6- Assistant Professor, Department of neurology, Ayattollah Kashani Hospital, Shahre Kord University of Medical Sciences, Shahre Kord, Iran 7- Professor of Neurology, MS Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran Abstract زمینــه: طراحــی سیســتم ثبــت ملــی مالتیپــل اســکلروزیس جهــت ایجــاد سیســتم هــای مراقبــت بیــاری کشــور مــورد نیــاز اســت. )1،2( اقــام اطلعاتــی ثبــت بیــاری ام اس، شــامل اطلعــات هویتــی بیــار، دوره بیــاری و تشــخیص، تاریخچــه خانوادگــی ام اس، وضعیــت ناتوانــی و دارو هــای مصفــی در طــول بیمریمــی باشــد. .هــدف: طراحــی و اســتاندارد ســازی اقــام اطلعاتــی سیســتم ثبــت ملــی بیــاری ام اس روش کار: جهــت اســتاندارد ســازی اقــام اطلعاتــی، مطالعــه روایــی و پایایــی انجــام شــد. 80 روایــی محتــوا براســاس نظــر 27 نفــر متخصــص ارزیابــی شــد. بــرای ارزيابــی روایــی ســؤاالت، به ترتیــب از شــاخص مقیــاس روایــی معیار-محتــوا )S-CVI( و شــاخص روايی مــورد- محتــوا )I-CVI( اســتفاده شــد. آزمــون و آزمــون مجــدد روایــی بــا اســتفاده از رضیــب همبســتگی درون گروهــی )ICC( ارزیابی شــد )3،4(. تجزیه و تحلیــل آماری با اســتفاده از نــرم افــزار SPSS انجــام شــد. نتایــج: بــه طــور کلــی 74 بیــار بــرای ســنجش پایایــی و 27 متخصــص بــرای ســنجش روایــی در طــرح رشکــت کردنــد. ارزش بحرانــی بــرای CVI براســاس مطالعــه ی مــروری 78/0 در نظــر گرفتــه شــد. همــه اقــام اطلعاتــی 78I-CVI < از نظــر مرتبــط بــودن، وضــوح و ســادگی دارای امتیــاز کامــل بودنــد بــه جــز تاریــخ رشوع و پایــان هــر دارو کــه از نظــر مرتبط بــودن به ترتیــب 0I-CVI/75= و 73/0و نــوع ام اس که از نظر ســادگی 0I-CVI/76= بود. امتیاز کلــی S-CVI برای مرتبــط بــودن، وضــوح و ســادگی >9/0 بــود )جــدول 1(. پایایــی : 27 بیــار )خــارج شــده از 74 بیــار مصاحبــه شــده ( بــرای ارزیابــی آزمــون مجــدد پایایــی دوبــاره مصاحبــه شــدند. ارزش بحرانــی بــرای ICC بــر اســاس مطالعــه مــروری 7/0 در نظــر گرفتــه شــدبــه جــز بــرای پیرشفــت بــه ام اس پیرشنــده ثانویــه و دلیــل بــرای قطــع دارو به ترتیب 0ICC/68 = و 64/0 بــود )جــدول 2( . جمــع بنــدی: اســتفاده از پرسشــنامه اســتاندارد معتــرب شــده، پزشــکان، پژوهشــگران و مدیــران را بــرای اجــرای سیســتم ثبــت ملــی بــر اســاس فــرم اســتاندارد حمیــت مــی کنــد. )5( . مجموعــه حداقــل اقــام اطلعاتــی مــورد نظــر در ثبــت بیــاری ام اس ایــران، روایــی و پایایــی مناســبی بــرای اســتفاده داشــت. واژههاي كليدي : مالتیپل اسکلروزیس، سیستم ثبت، روایی و پایایی، اقلم اطلعاتی

The necessity of a population-based cancer registry system in the country

ParisaYousefi konjdar1, Ali Mohammadi2 1- [email protected] 2- [email protected] Abstract رسطــان یــک بیــاری مزمــن اصلیوتحمیلــی بــه اجتــاع و دومیــن علــت مرگومیــر در جهــان میباشــد.امروزه بیــشاز 70 درصــداز مرگومیــر ناشــی از رسطــان در کشــورهای کمرتتوســعهیافته ودرحالتوســعه رخمیدهد.درایران،رسطــان بعــداز بیم ریهــای قلبیعروقــی و صدمــات غیرعمــدی ســومین عامــل مرگومیــر محسوب می¬شــود.بهطوریکه ســاالنه بیشاز30هــزار نفــر از جمعیــت ایــران دراثــر ایــن بیــاری جــان می¬بازنــد و تخمین زدهمیشــود ســاالنه بیشاز70هــزار موردجدیــد در جمعیــت کشــور رخمیدهد.ایــن رونــد نگرانکننــده،رضورت اجــرای برنامه های¬مداخلــهای کنــ لرت رسطــان را دوچنــدان مینم ید.رضوریتریــن نیــاز بــرای کنــرتل رسطــان وجــود اطلعــات دقیــق درمــورد میزانهــای بــروز مرگومیــر رسطــان میباشــد.باایــن دیــدگاه و رضورت علمــیفرآینــد ثبــتمــوارد رسطــان درمراکــز ثبــت رسطــان هســتهی اصلــی برنامــهی کنــ لرت رسطــان را تشــکیل میدهــد و ارزش افــزودهای دراجــرای تحقیقــات و پیشــگیری از رسطــان در برنامههــای بهداشــتی و مراقبتــی هرکشــور دارد.هــدف اصلــی ثبــت رسطان،جمعآوری،کددهــی و طبقهبنــدی ی همــهمــوارد رسطانــی مبنظــور تولیــد آمــار میــزان بــروز بیــاری رسطــان درجمعیــت مشــخص و دورهی زمانــی خــاص میباشــد.همچنین فراهممنــودن چارچوبــی بــرای تعییــن و کنــ ل رتمــوارد رسطــان درجامعــه می¬باشــد. آنچــه امــروزه ثبــت دقیــق رسطــان و اجــرای روشهــای مناســب پیشگیــری و درمــان بیم ریهــای رسطانــی را الزامــی میکند،به طوریکــه انــواع بیم ریهــای واگیــر کــه روزگاری بهعنــوان اولیــن عامــل مرگومیــر بهحســاب میآمدند،امــروزه بهطــور نســبی تحــت کنــرتل درآمدهانــد ولــی باتوجــه بــه تغییــر در روشهــای زندگــی و تغذیــه در جوامــع مختلف،افزایــش عمرمتوســطو امیدبهزندگی،رخــداد رسطــان در جمعیتهــا افزایــش یافتــه اســت. پیشبینــی می¬شــود کــه در ســال2030 رسطــان، اولیــن و مهمرتیــن علــت مــرگ انســان خواهدبــود. براســاس آخریــن بررســیهای آمــاری و اپیدمیولوژیــک در ایران،بعــداز بیم ریهــای قلبیعروقــی و حــوادث، رسطانهــا ســومین عامــل مــرگ بهحســاب میآینــد. در چنیــن رشایطــی برنامهریــزی کنــ لرت رسطانهــا یــک رضورت بهداشــتی کشــور میباشــد برنامههــای ثبــت رسطــان، نظامهــای اطلعاتــی هســتند کــه بــه امــور گــردآوری، مدیریــت و تحلیــل دادههــای مربوطبــه مــوارد رسطــان و مرگهــای ناشــیاز رسطــان میپردازند.اطلعــات گردآوریشــده در برنامههــای ثبــت رسطــان بــه متخصصیــن و ســازمانهای ســامت امــکان میدهــد تــا بهطــور اثربخشتــری بــه بررســی بــار رسطــان و ارزیابــی تاثیــر برنامههــای پیشــگیری و کنــ لرت رسطــان در جامعــه بپردازنــد. افزایــش دانــش درخصــوص علــل رسطــان مســتلزم وجــود دادههــای مناســب درخصــوص رسطانهــا اســت. عل وهبرایــن، متخصصیــن رسطــان گزینههــای درمانــی را براســاس اطلعــات رسطــان کــه عمدتــا توســط پاتولوژیســتها گــزارش میشــود،انتخاب میکنند.حتــی پــساز درمان،بــه دادههــای مرتبــط بــا رسطــان بــرای پیگیــری بیــاران نیــاز اســت. برنامــه ثبــت رسطــان قادراســت چنیــن دادههایــی را فراهم آورد،به همینجهــت ایــن برنامه هــاابزارهــای بســیار باارزشــیبــرای پیشــگیری،درمان،کنرتل رسطــان و پژوهــش درخصــوص ایــن بیــاری محســوب میشــود.بهطورخلصه اهمیــت ثبــت رسطــان درایــن حقیقــت نهفته¬اســت کــه ایــن برنامههــا دادههای¬کامــل و دقیقــی گــردآوری میکنــد کــه میتــوان از آنهــا در کنــ لرت رسطــان اســتفادهمنود. واژههاي كليدي : رسطان، نظام ثبت، ثبت رسطان

81 11-13 December 2 0 1 8

Need for Registration and Reporting of Acupuncture Trials in Parkinson s Disease in Iran.

Seyed Ehsan1, Sodabe2, Elahe3, Ahmad4, Seyed Amin5 1- Asadi 2- Mohamadi 3- Mohtasham 4- Rahimi 5- Asadi Abstract OBJECTIVE: Many people dealing with Parkinson s disease (PD) turn to complementary and alternative medicine when searching for a cure or relief from symptoms. Acupuncture is widely used in the iranian PD population to alleviate symptoms and in hopes of curing the illness. However, acupuncture use for PD patients has only recently begun to be studied scientifically and is still considered an unproven treatment for PD. Therefore, there is an urgent need for acupuncture to be studied, validated and used for PD. Thus, our study s aim is to examine how many acupuncture studies in PD are registered and reported in iran. METHODS: The registries Clinicaltrials.gov and the Clinical Research Information Service (CRIS) and the search engine PubMed were searched to find relevant human clinical studies involving acupuncture therapy in PD patients. We examined the registration of trials, the posting and publication of results, and whether published articles were registered. RESULTS: In Clinicaltrials.gov, one completed trial was found with published results. In CRIS, one completed trial was found with published results. A total of8 publications were found in our study: 3 articles were registered, but only 1 had the registered trial number listed in the article. CONCLUSION: Acupuncture is popular among the PD population in iranregardless of its unproven safety and efficacy. Despite the pressing need for clinical trials, the number of studies listed in the registries was small, and only a few publications were registered. More effort and rigor are needed to validate the efficacy and safety of acupuncture for PD. KEYWORDS: Acupuncture;iran; Parkinson’s disease; registration; reporting Keywords : Acupuncture; iran; Parkinson’s disease; registration; reporting Disease Disease Registry Feasibility for Patient Recovery Management

Zahra Galavi1, Ali Hajipour talebi2, Mohammad javad heydari3 1- Medical Informatics Graduate Student, University of Medical Sciences, Tehran, [email protected] 2- Undergraduate student Health information technology Student Research Committee, Army Medical University, Tehran, [email protected] 3- Undergraduate student Health information technology Student Research Committee, Army Medical University, Tehran, [email protected] Abstract Background and Aim: Cardiovascular disease has been the main cause of mortality and morbidity in the world of development over the past few decades. Nowadays, guidelines for how to diagnose and treat patients with heart failure (HF) are regularly published and used. However, heart failure registry is a tool that can help optimize the management of these patients. The purpose of this study was to determine the feasibility of a cardiovascular dysregulation regimen for the management of patients with the disease. Materials and Methods: The present study was a systematic overview with a comprehensive search of web sites, validated journals, Scopus, SID, Google Scholar, ISC and related articles in this field. The combination of them was used to search the English entry language and the keywords

82 Heart Failure, Disease Registry, Disease Management, and the time range from 2015 to 2018 was considered for selecting articles. The articles were found in about 124 articles, of which about 82 articles were included in the study, and then these articles were evaluated in terms of title, abstract and full text. After removing repetitive and unrelated, about 47 related articles Was selected by research. Results: The results of the studies have shown that the Diabetes Mental Registry is a valuable tool for managing the improvement of patients with the disease, since it enables clinics to focus on their potential and ability to improve their medical diagnosis and treatment. Through the online reports, they will focus on the proper registry, and despite the potential, patients can reassure themselves for the rapid and effective recovery of the regression. Conclusion: The review of the articles in this field suggests that the Dysfunctional Disease Registry provides the possibility of retrieving information about the extent to which doctors use the recommended guidelines, and the use of registry information may lead to better management. These patients improve quality of life, reduce the need for hospital care and reduce health costs, which should be equally beneficial for patients, healthcare professionals and the community. Key words: Cardiac failure, Disease registry, Disease management

Designing and starting up a information registry system for patients with gastric cancer in Iran

Maryam Dehghani1, Mohammad Pirouzan2, Mojtaba Mahjour3 1- Alborz University of Medical Sciences, Karaj, Iran 2- Student Research Committee, Alborz University of Medical Sciences, Karaj, Iran 3- Student Research Committee, Sabzevar University of Medical Sciences, Khorasan Razavi, Iran Abstract رسطــان معــده چهارمیــن رسطــان شــایع و دومیــن علــت مــرگ و میــر در جهــان و شــايع تريــن رسطــان دســتگاه گــوارش در ایــران مــي باشــد کــه بخصــوص در نواحــي شــال غــرب کشــور بــروز بســيار بااليــي دارد و بــر خــاف کشــورهاي غــريب ميــزان بــروز رسطــان معــده در طــي دو دهــه گذشــته روبــه افزايــش بــوده اســت. بنابرایــن ثبــت اطلعــات ایــن بیــاران امــری رضوری مــی باشــد کــه مــی تــوان از طریــق طراحــی رجیســرتی اطلعــات بیــاران مبتــا بــه رسطــان معــده ایــن کار را انجــام داد. لــذا مطالعــه حــارض بــا هــدف بررســی کاربــرد ســامانه ثبــت اطلعــات بیــاران مبتــابــه رسطــان معــده انجــام شــده اســت. پژوهــش حــارض، نوعــی مطالعــه مــروری جامــع اســت کــه از طریــق جســتجوی ترکیبــی کلــات کلیــدی registry ،gastric cancer، treatment ،Information و بــا دریافــت مقــاالت و خلصــه مقــاالت مرتبــط بــا موضوع در پایــگاه هــای داده Scopus، Springer, Pub Med، Science Direct بــه زبــان انگلیســی و در محــدوده ســال هــای 2010 تــا 2018 انجــام شــد. بررســی هــا نشــان دادنــد رجســ یرت رسطــان معــده، اطلعــات مربــوط بــه اپیدمیولــوژی بیــاری یــک فــرد از جملــه بافــت شناســی، مرحلــه و درجــه تومــور، درمــان و جراحــی، ســابقه خانوادگــی و یــک پرسشــنامه کیفیــت زندگــی را جمــع آوری و ذخیــره مــی کنــد. از بیــاران مراجعــه کننــده خواســته مــی شــود که هــر 6 ماه یکبــار پرسشــنامه کیفیت زندگــی را تکمیل کننــد. بــا طراحــی و راه انــدازی رجیســ یرت بیــاران مبتــا بــه رسطــان معــده مــی تــوان بــه درک بهــرت از علــل ابتــا بــه رسطــان معده،علئــم، مــکان هــای جغرافیایــی درگیــر و عوامــل ژنتیــک پــی بــرد و از نتایــج آن بــرای پیــش بینــی و درمــان اســتفاده کــرد. ثبــت اطلعــات بیــاران مبتــا بــه رسطــان معــده منبــع ارزشــمندی بــرای ارزیابی، برنامــه ریــزی درمــان، ارزشــیابی مســتمر دربــاره پیرشفــت بیــار و عملکــرد آن فراهــم مــی کنــد، همچنیــن اطلعــات مفیــدی را برای سیاســت گــزاران، متخصصــان مراقبت ســامت و ذینفعــان فراهــم کــرده و در نهایــت باعــث بهبــود مراقبــت و کیفیــت خدمــات درمــان مــی شــود. واژههاي كليدي : ثبت، رجیسرتی، ثبت اطلعات، رسطان معده، درمان

83 11-13 December 2 0 1 8

Needs assessment for infertility registry

Faeze Abbasi1, Ali Afraz2, Leila Ahmadian3, Mahdieh Montazeri4* 1. Health Information Science Department, Faculty of Management and Medical Science, Kerman University of Medical Sciences, Kerman, Iran, [email protected] 2. Health Information Science Department, Faculty of Management and Medical Science, Kerman University of Medical Sciences, Kerman, Iran, [email protected] 3. Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran, [email protected] 4. Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran, [email protected] Corresponding author: Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran, tel:034-31325406, zip-code:7618868368, email: [email protected] Abstract Introduction: Infertility is a prevalent health problem in the developing countries which has serious psycho-social consequences. The existence of a registry which records infertile couple information could help them to choose a suitable treatment method and improve the quality of healthcare and guiding services. need assessment for infertility registry in Iran has not been done. Therefore, we conduct a study to appraise the necessity and need of infertility registry, to effectively and efficiently implement the registry. Method: This is a cross-sectional survey study conducted in 1397. The target population was the gynecologists and midwives in Kerman University of Medical Science's hospitals. They were only 28, and all were included in the study. We use a questionnaire for data collection, which was extracted from relevant studies. The questionnaire consisted of three participants' demographic characteristics, and 20 question, to measure the need of infertility registry. Three medical informatics experts confirmed the reliability of the questionnaire and the validity of the questionnaire was measured by Cronbach's alpha. Descriptive Statistics and Univariate general linear models (GLM) were used to analyze the data in SPSS 24. Results: 75.4% of participants were under 27. 70.4% of participants had a bachelor degree, 3.7% had a master degree and 25.9% of them were gynecology resident and gynecologist. 70.6% of participants opined the necessity of infertility registry is high and 18.4% moderate, and 11% low. The results of GLM shows that age (p-value=0.006<0.05) and education(p-value=0.008<0.05) were a relationship between age and education and importance of infertility registry. participants with higher education and older age deemed infertility registry more necessary. Conclusion: Majority of participants believed that the implementation of and infertility registry is necessary, Which means, if the system will be built, they will use it regularly. The results of this study could help hospital authorities to understand the staff's opinions about the implementation of a infertility registry. Keywords: registry, infertile patient, need assessment The importance of registration system in cancer management and prevention

Rahime Tajvidi Abstract Introduction: The incidence of cancer is increasing in various countries of the world progressively. Cancer is a challenging topic for the public health system, so the cancer registry system plays an important role in conducting research to identify causes, patterns, epidemiologic studies, reduce prevalence, policy and plan for prevention. The present study aimed to explain the importance of the role of the cancer registration system in the care system in order to using the results in cancer control. Method: The present study was conducted by a protocol through searching keywords, abstracts 84 and full papers from Science Direct, PubMed, Scopus and ISC databases between 2013 and 2018. Results: A survey of 14 papers from 25 papers, showed that cancer registry is necessary to obtain reliable data for controlling programs of cancer incidence types and position, prevention, access to treatment, early diagnosis, improving the quality the cancer patient's life, assessing the epidemiological prevalence and cancer screening programs. Conclusion: Accurate registration of cancer patient's information and optimal management of the data is very important in early diagnosis, timely treatment, and effective economic costs of health care services .It is recommended that the health professionals identify comprehensively the information needs for designing of registration systems That they are essential for the diagnosing of cancer by improving the important infrastructures, as well as allocating appropriate budgets, and preferring it to improve the health of cancer patients.

Accuracy of Cancer Codes in population-based Cancer Registry Center of Mazandaran University of Medical Sciences in 2014

Zainab Qazizadeh1, Raziyesadat Mousavi2, Marjan Ghazisaeedi3, Gholamreza Ro- shandel4, Majid Yaghoubi Ashrafi5 1- PhD student of health information management, Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran 2- Bachelor of health information technology, Population-based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran 3- Associate Professor, Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran 4- Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran 5- General practitioner, Manager of Population-Based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran Abstract Introduction: Cancer Registry Program is an information management system to collects, manages, analyzes and reports data on cancer cases and cancer related death. Valid and accurate information is a prerequisite for achieving the goals of the cancer registration program. Usability of this information is possible when properly coded and categorized. As a result, coding should be evaluated to ensure the quality assurance. The aim of this study was to evaluate the accuracy of cancer coding in Mazandaran Population-Based Cancer Registry (MazPBCR). Method: This descriptive-cross sectional study was carried out on 333 pathological reports in 2014 that were coded by experts at MazPBCR. Then the reports were re-coded by the external coder without knowing the assigned codes. Finally, data were analyzed using SPSS 20 software and presented in descriptive statistics and Kappa coefficient. The six-level classification provided by Landis and Koch also was used to determine the agreement level. Results: The overall accuracy of coding was 0.88 and the agreement rate for topography, morphology and behavior of cancers were calculated 0.94, 0.93 and 0.95, respectively. In other words, the agreement level was assessed to be almost complete (excellent). The lowest agreement of topography codes were observed in unknown primary site (0.57), female genital organs and thyroid and endocrine glands (0.64). Also, the least amount of agreement in morphology codes was calculated in other types of carcinoma (0.72). Conclusion: The overall agreement on cancer coding in the MazPBCR was evaluated at the highest level of agreement, which indicates high quality of data. The results showed the low error rate; so, MazPBCR data can be considered reliable for use in epidemiological studies and cancer related researches. Keywords: Accuracy, coding, cancer registry

85 11-13 December 2 0 1 8

The Importance of Registering Hereditary Metabolic Patients in Iran s Health System

Ali Mohebbi1, Ali Rabbani2, Farzaneh Abasi3, Nahid Vafaei4, Fatemeh solgi5, Maryam Ali naghi Naeini6 1- phd candidate of developmental biology,Growth and Development Research Center, Tehran University- of Medical Sciences, Tehran, Iran- [email protected] 2- pediatric endocrinologist,Growth and Development Research Center, Children, Medical Hospital, Tehran University- of Medical Sciences, Tehran, Iran 3- pediatric endocrinologist,Growth and Development Research Center, Children, Medical Hospital, Tehran University- of Medical Sciences, Tehran, Iran 4- Growth and Development Research Center, Children, Medical Hospital, Tehran University- of Medical Sciences, Tehran, Iran 5- Growth and Development Research Center, Children, Medical Hospital, Tehran University- of Medical Sciences, Tehran, Iran 6- Growth and Development Research Center, Children, Medical Hospital, Tehran University- of Medical Sciences, Tehran, Iran Abstract مقدمــه: بیمریهــای متابولیــک ارثــی) inborn errors of metabolism (IEMs( ( بیمریهــای بیوشــیمیایی ارثــی هســتند که در آنها راه های ســوخت و ســاز مواد مختلف در بــدن دچــار اختــال مــی شــود . بــه دلیــل بــاال بــودن آمــار ازدواج هــای فامیلــی در ایــران ، بیــاری هــای متابولیــک ارثــی بــه عنــوان بیــاری هــای بومــی کشــورمان شــناخته مــی شــوند. روش بررســی: در ایــن مطالعــه ســامانه ثبــت بیمریهــای متابولیــک مبتنــی بــر Web همچنیــن بــا اســتفاده از آخریــن روشــهای امنیتــی )OWIN( ایجــاد شــده اســت. در ایــن ســامانه بــا توجــه بــه تعــداد بــاالی ایــن بیمریهــا و گاهــاً شــباهت علئــم ایــن بیمریهــا بــه یکدیگــر بــا اســتفاده از هــوش مصنوعــی و سیســتم تصمیــم یــار بالینــی و همچنیــن ایجــاد بانــک دانــش بیمریهــای متابولیــک، برنامــه طــوری طراحــی شــده کــه در صــورت نیــاز هــر تعــداد بیــاری جدیــد شناســایی شــود قابلیــت اضافــه شــدن بــه لیســت بیمریهــا رادارد. تاکنــون 511 عنــوان بیــاری متابولیــک ارثــی در ســامانه تعریــف شــده و بــرای ایــن بیــاران 1288 مورد تظاهــرات بالینــی و و بالغ بــر 1230عنــوان تســت تشــخیصی عمومــی و اختصاصــی ثبــت شــده اســت. یافتــه هــا: تــا بــه امــروز بیــاری متابولیــک ثبــت شــده کــه از ایــن میــان 205 بیــارGSD ، 80 بیــار MMA، 28 بیــار مبتــا بــه MPS ، 66 بیــار گوشــه ،57 بیــار گاالکتوزمــی ، 50 بیــار بــا اختــال ســیکل اوره ، 116 بیــار بــا تیروزینمیــا و 13 بیــار MSUD بودنــد. عــاوه بــر ایــن بیــاران 1010 بیــار کــودک مبتــا بــه دیابــت نــوع یــک نیــز ثبــت شــده انــد. نتیجــه گیــری: ایجــاد ســامانه ثبــت بیمریهــا و مدیریــت نظــام منــد و ســاختار گــرای پرونــده ســامت بیــاران بــرای ســاماندهی و انجــام برنامــه ریزیهــای مراقبتــی در هــر ســه ســطح درمانــی بــرای ایــن بیــاران می توانــد کمک کننده باشــد. بــه طوری کــه شناســایی برخــی از ایــن بیــاران همننــد MPS کــه درمــان قطعــی بــرای بیمریشــان وجــود نــدارد و تنهــا درمانهــای نگهدارنــده بــا تاثیــر بســیار انــدک وجــود دارد، برای بررســیهای ژنتیکــی آینــده در خانــواده بیــاران بــرای تشــخیص دوران جنینــی و پیشــگیری از تولــد نوزادانــی حائــز اهمیت می باشــد. واژههاي كليدي : بیمریهای متابولیک ارثی، سامانه ثبت، نظام سلمت

86 Evaluation of data quality of Mazandaran Population-Based Cancer Registry (MazPBCR)

Zainab Qazizadeh1, Raziyesadat Mousavi2, Majid Yaghoubi Ashrafi3 1- PhD student of health information management, Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran 2- Bachelor of health information technology, Population-based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran 3- General practitioner, Manager of Population-Based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran Abstract Introduction: The value of the cancer registry and its ability to preventing, screening, monitoring and tracking of this disease and its usability in research are dependent on the quality of data and quality control methods. So, the cancer registry programs should consider the quality of collected data in terms of their validity. The validity (accuracy) is defined as the proportion of cases with a given characteristic (e.g., sex and age) that truly have the attribute. Cancer registration programs use three quality indicators to verify the validity of their data. These indicators included the proportion of morphologically verified cases (MV%), the proportion of cases identified based on death certificate only (DCO%) and cases with primary site uncertain (PSU%). The purpose of this study was to investigate the validity of data of Mazandaran population-Based cancer Registry (MazPBCR). Methods: This study was carried out on 4460 new cancer cases in 2014 and 4017 new cancer cases in 2015 at the Cancer Registry Center of Mazandaran University of Medical Sciences. We calculated data quality indicators, including the proportion of missing data in the characteristic (age, sex, residual status, and topography), the proportion of microscopic verification cases and the proportion of cases identified based on death certificate only, using Excel 2016 software and the data quality indicators were compared in two years. Also, each indicator was compared to the standard value. Results: The MV% was 76.7% in 2015, which shows a progressive improvement compared to 2014 (64.5%). Comparing this indicator with the standard rate (above 70%) indicates that this indicator is well-suited to the Mazandaran Cancer Registry program. Also, compare with the standard (above 70%) show the good quality of this indicator in MazPBCR. The comparison of DCO% in 2015 (12.5%) with the previous year (22.1%) indicate a qualitative improvement of the MazPBCR program. According to standards, the rate below 20% is acceptable for this indicator. PSU% in 2015 and 2014 were 10.7% and 7.9%, respectively. The proportions of cases with unspecified age were 0.4% and 0.1%, respectively in 2015 and 2014. The percentages of unspecified residual status (urban and rural) were 32% and 14.9%, respectively, that indicate an increase in the precision of registration of patient's complete address. Finally, no case was reported with unspecified sex and unspecified method of diagnosis in both years. Conclusion: Increasing the indicators in 2015 compared to 2014, as well as the comparison of indicators with standard values, show the data quality improvement of population-based Cancer registry in Mazandaran University of Medical Sciences and the appropriate data quality for use in research studies. Keywords: Validity, Accuracy, cancer, population-based cancer registry

87 11-13 December 2 0 1 8

Epidemiologic Study of Stomach Cancer in Kurdistan Province , 2006- 2015

Farshad Shikhesmaeili1, Siamak Vahedi2, Maryam Parvare3, Asra zakaryaei4, Ebrahim Ghaderi5 1- Liver and Digestive Research Center, Kurdistan University of Medical Sciences, Sanandaj, Iran 2- 2Department of l Cardiovascular, Faculty of Medicine, Kurdistan University of Medical Sciences, Sanandaj, Iran 3- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran 4- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran 5- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran Abstract مقدمــه رسطــان معــده یکــیاز رسطــان هــای شــایع دســتگاه گــوارش در ایــران اســت. میــزان بــروز ایــن رسطــان در مناطــق مختلــف کشــور متفــاوت اســت. از آنجــا کــه شــناخت ویژگیهــای اپیدمیولوژیــک و رونــدتغییــر میــزان بــروز رسطــان بــرای برنامــه ریــزی هــای بهداشــتی اهمیــت دارد؛ بــر آن شــدیم اپیدمیولــوژی رسطــان معــده در اســتان کردســتان در طــی ســالهای 1394-1385 را بررســی مناییــم. روش کار ایــن مطالعــه مقطعی-توصیفــی روی بیــاران مبتــا بــه رسطــان معــده اســتان کردســتان طــی ســالهای 1394-1385 انجــام شــد. داده هــا از مرکــز ثبــت رسطــان مبتنــی بــر جمعیــت دانشــگاه علوم پزشــکی کردســتان کســب شــد. مــواردی کــه اطلعــات آنان ناقــص بود از طریــقمتــاس تلفنــی بــا فــرد یــا بررســی پرونــده بیــار تکمیــل شــد. در مرحلــه آنالیــز آمــاری، فراوانــی رسطــان کولورکتال براســاس جنســیت، گــروه های ســنی، ســال های مطالعــه و شهرســتانهای اســتان، میــزان بــروز خــام و میــزان بــروز اســتاندارد شــده ســنی محاســبه گردیــد. اســتاندارد ســازی بــه روش مســتقیم و بــا اســتفاده از جمعیــت اســتاندارد ســال 2000 ســازمان جهانــی بهداشــت انجــام شــد. بــرای انجــام آنالیزهــا از نــرم افــزار STATA نســخه 12 اســتفاده شــد. نتایــج در طــی ســالهای مطالعــه، 2027 مــورد رسطــان معــده تشــخیص داده شــده اســت. فراوانــی در مــردان 1516 ) 75 درصــد ( و در زنــان 511 مــورد ) 25 درصــد ( بــود. بیشــرتین فراوانــی مربــوط بــه گــروه ســنی 74-70 ســال ) 363 مــورد ( بــود. در ســال 87 بیشــرتین ) 265 مــورد ( و ســال 94 کمرتیــن ) 170 مــورد ( مــورد مشــاهده شــد. میــزان بــروز خــام رسطــان معــده در ســال 85 و 90 بــه ترتیــب 64/35 و 52/28 در صــد هــزار نفــر و میــزان بــروز اســتاندارد ســنی در هــر دو ســال بــه ترتیــب 96/42 و 87/35 در صــد هــزار نفــر بــود. بحــث و نتیجه گیری براســاس نتایــج، میــزان بــروز رسطــان معــده در طــی ســالهای 94-85 رونــدی نســبتا ثابــت داشــت و در مــردان بیشــرت بــود. در ســال 87 کــه برنامــه ثبــت رسطــان کشــوری اجــرا شــد بیشــرتین فراوانــی رسطــان معــده مشــاهده شــد. واژههاي كليدي : اپیدمیولوژی، رسطان معده، ميزان بروز، کردستان Epidemiologic Study of Colorectal Cancer in Kurdistan Province , 2006-2015

Siamak Vahedi1, Farshad Shikhesmaeili2, Seyed Jalaladin Naghshbandi3, Bijan Nou- ri4, Maryam Parvare5 1- 1- Department of l Cardiovascular, Faculty of Medicine, Kurdistan University of Medical Sciences, Sanandaj, Iran 2- Liver and Digestive Research Center, Kurdistan University of Medical Sciences, Sanandaj, Iran 3- Liver and Digestive Research Center, Kurdistan University of Medical Sciences, Sanandaj, Iran 4- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran 5- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran Abstract مقدمــه رسطــان کولورکتــالشــایعرتین رسطــان دســتگاه گــوارش اســت. در ایــران پنجمیــن رسطــان شــایع در مــردان و ســومین در زنــان محســوب مــی شــود. میــزان بــروز آن در مناطــق غربــی کشــور همننــد برخــی کشــورهای آســیایی در حــال افزایــش اســت. شــناخت اپیدمیولــوژی رسطان بــرای اهــداف برنامه ریــزی بهداشــتی حائز اهمیت اســت. لــذا در ایــن پژوهــش بــر آن شــدیم اپیدمیولــوژی رسطــان کولورکتــال در اســتان کردســتان در طــی ســالهای 1394-1385 را بررســی مناییــم. روش کار ایــن مطالعــه مقطعی-توصیفــی روی بیــاران مبتــا بــه رسطــان کولورکتــال اســتان کردســتان طــی ســالهای 1394-1385 انجــام شــد. داده هــا از مرکــز ثبــت رسطــان مبتنــی بــر جمعیــت دانشــگاه علــوم پزشــکی کردســتان کســب شــد. مــواردی کــه اطلعــات آنــان ناقــص بــود از طریــق متــاس تلفنــی بــا فــرد یــا بررســی پرونــده بیــار تکمیــل شــد. در مرحلــه آنالیــز آمــاری، فراوانــی رسطــان کولورکتــال براســاس جنســیت، گــروه هــای ســنی، ســال هــای مطالعــه و شهرســتانهای اســتان، میــزان بــروز خــام و میــزان بــروز اســتاندارد شــده ســنی محاســبه گردیــد. اســتاندارد ســازی بــه روش مســتقیم و بــا اســتفاده از جمعیــت اســتاندارد ســال 2000 ســازمان جهانــی بهداشــت انجــام شــد. بــرای انجــام آنالیزهــا از نــرم افــزار STATA نســخه 12 اســتفاده شــد. نتایــج در طــی ســالهای مطالعــه، 807 مــورد رسطــان کولورکتــال تشــخیص داده شــده اســت. مــردان 86/57 درصــد

88 ) 467 مــورد ( و زنــان 14/42 درصــد ) 340 مــورد ( مــوارد را شــامل شــدند. بیشــرتین فراوانــی مربــوط بــه گــروه ســنی 59-55 ســال ) 102 مــورد ( بــود. شهرســتان ســنندج بــا 395 مــورد و شهرســتان رسوآبــاد بــا 9 مــورد بــه ترتیــب بیشــ ینرت و کمرتیــن فراوانــی رسطــان کولورکتــال را داشــتند. بیشــرتین میــزان بــروز خــام در ســال 92 ) 74/7 در صــد هــزار نفــر ( و کمرتیــن در ســال 85 ) 05/3 در صــد هــزار نفــر ( مشــاهده شــد. میــزان بــروز اســتاندارد ســنی در ســال 85 و 90 بــه ترتیــب 73/6 و 41/13 در صــد هــزار نفــر بــود. بحــث و نتیجــه گیــری براســاس نتایــج، میــزان بــروز رسطــان کولورکتــال در اســتان کردســتان رو بــه افزایــش اســت و درصــد مــوارد زیــر 50 ســال نســبت بــه کشــورهای پیرشفتــه باالســت. انجــام غربالگــری افــراد در معــرض خطــر جهــت تشــخیص زودرس بیــاری رضوری بــه نظــر مــی رســد. واژههاي كليدي : اپیدمیولوژی، رسطان کولورکتال، بروز، کردستان

Title: Challenges of registering health information of Afghan immigrants in Tehran province from views of health staff; a qualitative research

Authors: Afsaneh Takbiri1, Ebrahim Jafari Pooyan2, Amirhosein Takian2, Akram Bani Asadi1 1 .Department of health management and economics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran (corresponding author: [email protected]). 2. Department of health management and economics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran. Abstract Introduction: Migration is known as a political, social and health challenge. Among more than 40 million registered displaced in the world, half of them are belong to Iraq and Afghanistan (two countries of Iran’s neighbors). Regarding the settlement of immigrants in urban and rural areas of Iran and the lack of proper access to health and treatment services, a serious threat for preventing and controlling contagious diseases in the country's national health system has been created. Information on the use of health services by immigrants to address health care access problems, Identify high-risk groups for prevention and assessment of health systems is important. The purpose of this paper is to examine the challenges of registering immigrants' health information from the viewpoint of health sector employees in various organizations providing services in Tehran province. Methods: This is a qualitative research conducted in 2017. Face-to-face and semi-structured interviews were done with 35 of care providers from different health services organizations chosen were purposively. Data analysis was done using thematic analysis method. Results: The mean age of participants in the study was 37.2 (8.3) and their work experience varied between 2 and 30 years. 25 of participant were Female and 10 were male. The challenges of registering health information of immigrants from the perspective of health workers are divided into three categories: the challenges of identification evidences of immigrants, the challenges of their entry into Iran, and the challenges of their residence status. Conclusion: The results of this study showed that health sector staffs face more challenges in registering immigrant health information than Iranian populations. The challenges identified in this study provided the necessary knowledge for policymakers to improve recording the health information of immigrants. Keywords: Health information, immigrants, Afghanistan, health worker

89 11-13 December 2 0 1 8 Title: Quality Control in Persian Registry of Cardio Vascular Disease (PROVE)

Ghasem Yadegarfar1*, Hamid Reza Roohafza2, Davood Shafiei3, Mahshid Givi3, Mo- hammad Garakyaraghi3, Nizal Sarrafzadegan2 1- Heart Failure Research Center, Cardiovascular Research Institute, & School of Public Health, Isfahan University of Medical Sciences, Isfahan, Iran (*Presenter) 2- Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 3- Heart Failure Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran Abstract Introduction and Aim:The value of any disease registry (including PROVE) and its ability to carry out disease control activities rely heavily on the underlying data quality and the quality control procedures which included comparability, timeliness, validity, accuracy and completeness. Given data quality control procedure in place, the disease registry provides data to be used for designing and running CVDs prevention programs, evaluating diagnosis and treatment protocols, assessing survival rate, determining patients’ quality of life and suggesting a template for the whole country. Aim: This paper presents methodology of data quality control in PROVE, data problems and suggesting approaches to cope with them. Methods:Data quality control procedure applies into phases: in phase I, a registry team member evaluates collected data before passing them to quality control section (QCS). In phase II, QCS staff assesse the quality of data and an independent assessor evaluates accuracy of diagnoses. A standardised questionnaire is used to collect cold data (from hospital records) or hot (at visiting time of patients). After checking the collected data, they are entered into the registry computer program. After the data entry, a team member perform a preliminary data analysis to determine any missing or wrong values and try to correct them if possible. Then, they forward the gathered data to the QCS. Independent assessor does two tasks: a) to evaluate the accuracy of diagnoses based on diagnosis protocol of each registry, b) to assess accuracy of collected data and any data problems including missingness by initial analysis of 5 to 10% of records Data quality control indices of each PROVE registry have been determined which should be investigated and reported to QCS. The indices are as follows: 1- Diagnosis validity index which assessed by independent assessor can be calculated by number of valid diagnoses divided by total number of records assessed. 2- The completeness is explored in two phases- at phase I demographic characteristics including age, gender, national identification number (NID) and address of patients are evaluated and in phase II clinical characteristics. 3- The coverage index is computed by number of patients records in a specific period at each hospital which recorded by registry team divided by total number of eligible hospital records in the same period. 4- The timeliness index is evaluated by whether registered patient records occurred within 3 to 6 months of admission of patients. This will be done by comparing the date of hospitalization with date of recorded at the registry. Results:Above mentioned method was applied on 2476 records of PROVE/HF which registered from 2014 to 2017. The completeness index was good, addresses were incomplete for 0.4% (11 patients), telephone for 19% (472 patients), NID for 6.3% (156 patients), gender and age were completed for all records. The clinical characteristics were also evaluated good, for example, hospital admission reasons were completed fully, however, initial blood pressure was missing for 1.1% (28 patients), primary etiology of HF was not completed for 0.5% (13 patients), and alcohol related cardiomyopathy was missing for 0.4% (11 patients). Conclusion: PROVE/HF data quality control indices indicate that HF registry data are cautiously reliable for analyzing and providing reports to clinicians. The data quality control should be in place continuously to make sure registry data are valid and reliable for clinical and research purposes.

90 Quality Control of Persian Cardiovascular Registry System: A Pilot Study

Asieh Mansouri1, Alireza Khosravi2, Feridoun Noohi3, Majid Maleki4, Samaneh Mo- stafavi5, Farzad Shahsanayi6, Nizal Sarrafzadegan7 1- Hypertension Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 2- Interventional Cardiology Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 3- Rajaie Cardiovascular Medical and Research Center, Iran University of Medical Sciences, Tehran, Iran 4- Rajaie Cardiovascular Medical and Research Center, Iran University of Medical Sciences, Tehran, Iran 5- Isfahan Cardiovascular Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 6- Interventional Cardiology Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 7- Isfahan Cardiovascular Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran Abstract مقدمــه: از آنجایــی کــه داده هــای ثبــت شــده در یــک سیســتم ثبــت، مبنایــی مهــم بــرای انجــام مطالعــات ســبب شــناختی، هزینــه اثــر بخشــی و ... مــی باشــند، اطمینــان از کیفیــت آنهــا حائــز اهمیــت ویــژه ای اســت. از ایــن رو طــی یــک فرآینــد ارزشــیابی اولیــه، داده هــای ثبــت شــده در ســامانه ی کشــوری ثبت بیــاری هــای قلبی-عروقی بررســی گردیــد. روش اجــرا: ســامانه ی کشــوری ثبــت بیــاری هــای قلبی-عروقــی، نظــام جامعــی بــرای ثبــت بیــاری هــای قلبی-عروقی اســت کــه در حــال حارض فــاز اول آن کــه بــه ثبــت مــوارد آنژیوگرافــی، آنژیوپلســتی و STMI اختصــاص یافتــه اســت در 15 بیمرســتان دانشــگاهی واقــع شــده در 9 اســتان کشــور راه انــدازی گردیــده اســت. بــه منظــور ارزشــیابی اولیــه ی داده هــا، تعــداد 55 پرونــده ی ثبــت شــده در ســامانه، بــه طــور تصادفــی انتخــاب گردیدنــد. ارزشــیابی در ســه بخــش اطلعــات پایــه، بالینــی و آنژیوگرافــی- آنژیوپلســتی انجــام گردیــد. صحــت اطلعــات پایــه، بالینــی و آنژیوگرافــی- آنژیوپلســتی بــه ترتیــب از طریــق مصاحبــه ی تلفنــی بــا بیــار، بررســی پرونــده ی بیمرســتانی بیــار و مشــاهده ی فیلــم آنژیوگرافــی یــا آنژیوپلســتی بیــار بررســی گردیــد. کیفیــت داده هــا بــا اســتفاده از ســه شــاخص completeness، Accuracy و Consistency بررســی گردیــد. نتایــج: شــاخص Completeness بــه عنــوان درصــد پرونــده هــای بــا فقــدان داده هــای missing، شــاخص Accuracy بــه عنــوان درصــد پرونــده هــای بــا تطابــق کامــل بیــن داده هــای ثبــت شــده در ســامانه بــا داده هــای حاصلــه از مصاحبــه ی تلفنــی با بیــار؛ پرونــده ی بیمرســتانی و فیلم هــای آنژیوگرافی و آنژیوپلســتی و شــاخص Consistency بــه عنــوان درصــد پرونــده هــای دارای فقــدان هرگونــه discrepancy بیــن کلیــه ی داده هــای ثبــت شــده در ایــن بررســی به ترتیب برابــر بــا 76.6%، 82.7% و 86.7% بــرآورد گردیدنــد. نتیجــه گیــری: ایــن ارزشــیابی، نشــان داد داده هــای ثبــت شــده در ســامانه، دارای کیفیــت قابــل قبولــی مــی باشــند. بــا ایــن حــال انجــام ارزشــیابی بــر روی منونــه ی بزرگــرت و بــر اســاس ســایر شــاخص هــای کیفیــت داده هــا، بــه عنــوان بخــش مهمــی از فرآینــد کنــرتل کیفیــت ایــن ســامانه در دســت اقــدام مــی باشــد کــه نتایــج حاصلــه ی آنهــا بــه صــورت ادواری گــزارش خواهنــد شــد. واژههاي كليدي : کنرتل کیفیت، Completeness، Accuracy، Consistency quantity evaluation of cancer population sheets registration of kosar and shafa hospitals soheilasadat ghazavi shariatpanahi1 1- semnan university of medical sciences Abstract مقدمــه و هدف:.اولیــن قــدم در کنــ لرت رسطــان، جمــع آوري اطلعــات و آمــار دقیــق و کامــل از بیــاران رسطانــی مــی باشــد کــه کـــه ایـــن هـــدف درقالــب برنامــه ثبــت رسطــان مبتنــی بــر جمعیــت قابــل دســت یابــی مــی باشــد.این امــر مــی توانــد در برنامــه ریــزي صحیــح بــراي کنــ لرت رسطــان مفیـــد واقـــع شــود، لــذا اطلعــات ناقــص نبایــد ذخیــره شــوند و فقــط بایــد پروندههــای تکمیــل شــده در سیســتم ثبــت شــوند. هــدف از ایــن مطالعــه ارزیابــی کمــی ثبــت اقــام اطلعاتــی اوراق ثبــت رسطــان بــوده اســت. روش مطالعــه: مقطعــی بــوده اســت.ابزارگردآوری اطلعــات چــک لیســت بــوده کــه بــا مراجعــه بــه بخــش مدیریــت اطلعــات ســامت بیمرســتانهای کوثــر و شــفابه تعداد80پرونــده اقــدام بــه تکمیــل گردیــده اســت.نتایج بــا اســتفاده ازآمارتوصیفــی و نــرم افزارspss16تجزیــه و تحلیــل گردیــده اســت. یافتــه هــا:در بخــش اطلعــات هویتی:بیشــرتین میــزان ثبــت نــام و نــام خانوادگــی و نــام پدروآدرس100درصــد، ،80درصــد شــاره پرونــده، در بخــش اطلعــات بالینــی: بیشــرتین میــزان ثبــت تشــخیص بالینــی 37.5درصــدو کمرتیــن مــکان تومور1.2درصــد،درروش تشــخیص )میکروســکوپی( بیشــرتین میــزان ثبــت روش تشــخیص100درصد، نــوع منونــه پاتولوژی57.5درصــد، درروش تشخیص)غیرمیکروســکوپی(ثبت رادیوگرافــی و ماموگرافــی و جــواز دفن100درصــدو در بخــش مشــخصات تومور:مکان متاســتاز تومور بیشــرتین میــزان ثبت100درصدوتشــخیص نهایــی 57.5درصــد وکمرتیــن میــزان ثبــت مرحلــه تومــور ومــکان متاســتاز بــوده کــه اصــا ثبــت نگردیــده اســت. نتیجــه گیــری: اطلعــات گــردآوری شــده در برنامــه هــای ثبــترسطــان بــه متخصصیــن و ســازمان هــای ســامت امــکان مــی دهــد تــا بــه طــور اثــر بخــش تــری بــه بررســی بــار رسطــان و ارزیابــی تاثیــر برنامــه هــای پیشــگیری و کنــ ل رترسطــان در جامعــه بپردازنــد. ارزیابــی کمــی،اوراق ثبــت رسطــان ، جمعیــت واژههاي كليدي : ارزیابی کمی،اوراق ثبت رسطان ، جمعیت 91 11-13 December 2 0 1 8

Estimation of completeness in Cancer Registries by FLOW METHOD

Asieh Mansouri1 1- PhD in Epidemiology, Hypertension Research Center, Isfahan Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran Abstract Introduction: Our purpose was to summarize the findings on estimation methods of cancer registry completeness with a special emphasis on flow method. Method: In this review, Medline, Embase, scopus, SID, magiarn and Barkat Knowledge Network System databases were searched with appropriate keywords for finding relevant manuscripts. Results: Flow method as a quantitative method for estimation of completeness of cancer registry, is based on the concept that registration is a time-dependent event observed after diagnosis and follows a probabilistic approach. It estimates the completeness considering 2 assumptions: Death certificates are received for all patients dying with malignant disease mentioned on the death certificate and Cancer patients are not registered from sources other than death certificates after death. DCO (death certificate only), DCI (death certificate initially) and unregistered cases (missing and lost) are addressed to estimate completeness by flow method. Using distribution of survival times for registered patients, death certificates of a sample of registered patients who have died and distribution of the interval between diagnosis and registration, completeness can be readily estimated. Conclusion: Advantages of flow method over others in common use are: ability to indicate the increasing in completeness as a function of time since diagnosis in patients diagnosed in a given period and presenting an estimate of the proportion of cancer cases who are probably never to be registered (lost group). Keywords : Cancer Registry, Flow method, completeness

Epidemiologic Study of Breast Cancer in Kurdistan Province , 2006- 2015

Parvaneh Taymoori1, Hassan Moaiery2, Shahrokh Adhami3, Ebrahim Ghaderi4, Sharmin Sadeghi5 1- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran 2- Department of Surgery, Faculty of Medicine, Kurdistan University of Medical Sciences, Sanandaj, Iran 3- Department of Surgery, Faculty of Medicine, Kurdistan University of Medical Sciences, Sanandaj, Iran 4- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran 5- Liver and Digestive Research Center, Kurdistan University of Medical Sciences, Sanandaj, Iran Abstract مقدمــه: پســتان محــل شــایعی بــرای ایجــاد بدخیمی¬هــای باالقــوه کشــنده در زنــان اســت. رسطــان پســتان پرولیفراســیون بدخیــم آن¬دســته از ســلول¬های اپی¬تلیــال اســت کــه مجــاری یــا لوب¬هــای پســتان را می¬پوشــانند و حــدود یک¬ســوم همــۀ رسطان¬هــای زنــان را تشــکیل می¬دهــد. از هــر 9 زن ســاکن آمریــکای شــالی کــه تــا ســن 80 ســالگی عمــر می¬کنــد، در یــک نفــر رسطــان مهاجــم پســتان ایجــاد می¬شــود. اســتفادۀ روتیــن از غربالگــری ماموگرافــی در زنــان بــاالی 40 ســال، مرگ¬ومیــر رسطــان پســتان را 33 درصــد کاهــش می¬دهــد، لــذا، ایــن مطالعــه بــرای بیمریابــی رسطــان پســتان در زنــان شهرســتانهای ســنندج، ســقز و مریــوان انجــام گردیــد. روش كار: ایــن مطالعــه مقطعی-توصیفــی روی بیــاران مبتــا بــه رسطــان پســتان اســتان کردســتان طــی ســالهای 1394-1385 انجــام شــد. داده هــا از مرکــز ثبــت رسطــان مبتنی بــر جمعیــت دانشــگاه علــوم پزشــکی کردســتان کســب شــد. مــواردی کــه اطلعــات آنــان ناقــص بــود از طریــق متــاس تلفنــی بــا فــرد یــا بررســی پرونــده بیــار تکمیل شــد. در مرحلــه آنالیــز آمــاری، فراوانــی رسطــان کولورکتــال براســاس جنســیت، گــروه هــای ســنی، ســال هــای مطالعــه و شهرســتانهای اســتان، میــزان بــروز خــام و میــزان بــروز اســتاندارد شــده ســنی محاســبه گردیــد. اســتاندارد ســازی بــه روش مســتقیم و بــا اســتفاده از جمعیــت اســتاندارد ســال 2000 ســازمان جهانــی بهداشــت انجــام شــد. بــرای انجــام آنالیزهــا از نــرم افــزار STATA نســخه 12 اســتفاده شــد. يافتههــا: در طــی ســالهای مطالعــه، 1100 مــورد رسطــان پســتان تشــخیص داده شــده اســت. میانگیــن ســنی بیــاران 5/1 ± 72/51 ســال اســت. بیشــرتین و کمرتیــن فراوانــی بــه ترتیــب در گــروه هــای ســنی 49-45 ) 195 مورد ( و 89-85 ســال ) 3 مورد ( اســت. شهرســتانهای ســنندج، ســقز و مریــوان بــه ترتیــب بــا 64/53، 63/10 و 90/8 درصــد بیشــرتین مــوارد را داشــتند. در ســال 91 و 93 بیشــرتین ) 141 مــورد ( و در ســال 85 کمرتیــن ) 69 مــورد ( مــورد

92 تشــخیص داده شــده اســت. میــزان بــروز خــام و اســتاندارد ســنی رسطــان پســتان در ســال 85 بــه ترتیــب 39/16 و 50/21 و در ســال 90 بــه ترتیــب 17/27و 62/30 در صــد هــزار نفــر اســت. نتيجهگــري: آمــار چنــدســاله رسطــان پســتان در شهرســتانهای ســنندج، ســقز و مریــوان نشــان از افزايــش بــروز ايــن رسطــان داشــته اســت. بــا توجــه بــه اينكــه سيســتم ثبــت رسطــان نســبت بــه گذشــته عملكــرد بهــ ي رتدارد امــااحتــال افزايــش فــراواين رسطــان پســتان در اثــر تغيي ســبك زندگــي و افزايــش عوامل خطر ســاز بــه وضــوح ديــده ميشــود. بــا برنامهريــزي جهــت پيشــگيي اوليــه ميتــوان اقــدام موثــري در راســتاي كاهــش ايــن بيــاري و يــا تشــخيص در مراحــل اوليــه انجــام داد. واژههاي كليدي : رسطان پستان، ميزان بروز، استان كردستان Cancer Incidence in Mazandaran University of Medical Sciences (MAZUMS): Report of an ongoing Population-Based Cancer Registry, 2014

Majid Yaghoubi Ashrafi1, Ghasem Janbabaei2, Raziyesadat mousavi1, Gholamreza Ro- shandel3, Akbar Hedayatizadeh-Omran2, Reza Alizadeh-Navaei2, Zainab Qazizadeh1 1- Population-Based Cancer Registry Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Mazandaran, Iran 2- Gastrointestinal Cancer Research Center, Comprehensive Cancer Center, Mazandaran University of Medical Sciences, Sari, Iran 3- Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Ira n

Abstract Introduction: Cancer has become a major problem in public health in Iran and other parts of the world. Since the age pattern of cancer incidence and distribution is related to regional conditions and environmental factors, having basic descriptive information such as incidence rates in population and in specific age groups can help find risk factors for this group of disease. Also, the amount of cancer incidence in recent years demonstrates some changes in its trend that makes it necessary to investigate the pattern of incidence in different regions. So, the aim of this study is to investigate the epidemiology of new cancer cases in the population covered by MAZUMS in the year 2014. Method: This descriptive cross-sectional study was done by collecting data on new cancer cases in 2014. The study population included all new cancer cases in the population covered by MAZUMS (all counties in Mazandaran province except Babol). Patients whose age was unknown or their settlement region was Outside of the area covered by MAZUMS, were excluded. Finally, demographic data such as age, gender, county of residence, the region of residence (urban, rural), topography, morphology and cancer behavior in 4,460 new cases of cancer in 2014, were investigated and analyzed. Findings: The age-standardized incidence rates of cancers in men and women were 174.7 and 150.3 per 100 thousand persons respectively. So, the incidence in men was slightly higher than in women. The highest incidence rate of cancer was observed in the 60-64 year age group and the lowest in the 10-14 year age group. The geographical distribution of cancer showed the highest incidence rates in Sari, Behshahr, Miandorud, and Fereydounkanar counties and the lowest incidence rates in Amol, Chalus and Abbasabad respectively. Also, breast, stomach, prostate, colorectal and hematopoietic cancers have the highest incidence rates in the covered population. Conclusion: The age-standardized incidence rate of cancers in males and females were Similar to those in neighboring provinces. On the other hand, according to the present results, breast and gastrointestinal cancers including stomach and intestines are the priorities of health in the region and planning a program to control them should be one of the top priorities. Keywords: Incidence, Cancer, Mazandaran, Iran

93 11-13 December 2 0 1 8

Epidemiologic Study of Lung Cancer in Kurdistan Province , 2006- 2015

Bijan Nouri1, Sabah Hassani2, Sharmin Sadeghi3 1- Social Determinants of Health Research Center, Research Institute for Health Development, Kurdistan University of Medical Sciences, Sanandaj, Iran 2- 2- Department of lung, Faculty of Medicine, Kurdistan University of Medical Sciences, Sanandaj, Iran 3- 3- Liver and Digestive Research Center, Kurdistan University of Medical Sciences, Sanandaj, Iran Abstract مقدمــه: رسطــان ریــه یکــی از مســائل مهــم بهداشــتی و از علــل عمــده مــرگ ناشــی از رسطــان در ســطح دنیــا اســت. انتظــار مــی رود، مــوارد جدیــد رسطــان ریــه از 01 میلیــون در ســال 2000 تــا 15 میلیــون در ســال 2020 افزایــش یابــد کــه 60 درصــد ایــن افزایــش مربــوط بــه کشــورهای در حــال توســعه می باشــد. شــناخت اپیدمیولوژی رسطــان در تدویــن برنامــه هــای کنــ ل رترسطــان حائــز اهمیــت اســت. لــذا در ایــن پژوهــش بــر آن شــدیم اپیدمیولــوژی رسطــان ریــه در اســتان کردســتان در طــی ســالهای 1394-1385 را بررســیمناییــم. روش کار: ایــن مطالعــه مقطعی-توصیفــی روی بیــاران مبتــا بــه رسطــان ريــه اســتان کردســتان طــی ســالهای 1394-1385 انجــام شــد. داده هــا از مرکــز ثبــت رسطــان مبتنــی بــر جمعیــت دانشــگاه علــوم پزشــکی کردســتان کســب شــد. مــواردی کــه اطلعــات آنــان ناقــص بــود از طریــق متــاس تلفنــی بــا فــرد یــا بررســی پرونــده بیــار تکمیــل شــد. در مرحلــه آنالیــز آمــاری، فراوانــی رسطــان کولورکتــال براســاس جنســیت، گــروه هــای ســنی، ســال هــای مطالعه و شهرســتانهای اســتان، میــزان بــروز خــام و میــزان بــروز اســتاندارد شــده ســنی محاســبه گردیــد. اســتاندارد ســازی بــه روش مســتقیم و بــا اســتفاده از جمعیــت اســتاندارد ســال 2000 ســازمان جهانــی بهداشــت انجــام شــد. بــرای انجــام آنالیزهــا از نــرم افــزار STATA نســخه 12 اســتفاده شــد. نتایــج : در طــی ســالهای مطالعــه، 516 مــورد رسطــان ریــه تشــخیص داده شــده اســت. فراوانــی در مــردان 402 مــورد ) 78 درصــد ( و در زنــان 114 مــورد ) 22 درصــد ( اســت. بیشــرتین و کمرتیــن فراوانــی بــه ترتیــب مربــوط بــه گــروه هــای ســنی 70-74 ) 81 مــورد ( و 20-24 ســال ) 1 مــورد ( اســت. شهرســتانهای ســنندج، ســقز و مریــوان بــه ترتیــب بــا 16/41، 51/13 و 48/12 درصد بیشــرتین موارد را داشــتند. در ســال 88 بیشــرتین ) 88 مــورد ( و در ســال 94 کمرتیــن ) 33 مــورد ( مــورد تشــخیص داده شــده اســت. میــزان بــروز خــام در ســالهای 88 و 94 بــه ترتیــب 6 و 2 مــورد در صــد هــزار نفــر اســت. میــزان بــروز خــام و اســتاندارد ســنی رسطــان ریــه در ســال 85 بــه ترتیــب 88/13 و 83/13 و در ســال 90 بــه ترتیــب 75/7 و 88/8 در صــد هــزار نفــر اســت. بحــث و نتیجــه گیــری: ايــن مطالعــه نشــان داد كــه بيشتــر مبتليــان بــه رسطــان ريــه را در مــردان تشــكيل دادهانــد و همچنــن اكثيــت مبتليــان از رده كارســينوم ريــه غــر ســلول كوچــك بودهانــد. الزم بــه ذكــر اســت كــه اكثيــت بيــاران در زمــان تشــخيص مرحلــه بــاال قــرار داشــتند كــه حــايك از تشــخيص بيــاري در مرحلــه پيرشفتــه و متاســاز بيــاري اســت. واژههاي كليدي : اپیدمیولوژی، رسطان ریه، ميزان بروز، کردستان Iranian Asthma Registry: Influenza Vaccination in Asthmatic Patients

Shahla kafash Khadivi1, Mohammad Reza Fazlollahi1, Nastaran Sabetkish1, Homa Sadri1, Nasrin Khabir1, Zahra Pourpak1, Mostafa Moin1 1- Tehran University of Medical Sciences Abstract Aim: Influenza vaccination is recommended to prevent influenza-related complications in asthmatic patients. In this regards, we report the state of influenza vaccination in 1456 patients registered in a comprehensive software named Iranian Asthma Registry (IAR).. Material and Method Patients were referred to Immunology, Asthma and Allergy Research Institute (IAARI) from 2008 to 2018. After an inclusive visit, their data were gathered and registered. Results A total of 1456 patients were registered in the system from which 456 individuals were aged below 6 years old (37.5%); while 786 (54%) and 97 (6.7%) cases were aged 6-18 years old and above 18 years old, respectively. Female patients compromised 63.1% (n=919) of participants and 509 cases were male (35%). Influenza vaccination was up to date in 548 individuals (37.6%); while 420 cases did not received influenza vaccine recently (28.8%). A total of 418 patients had never received this vaccine (28.7%) and contraindication of its injection was detected in 3 children. A significant relationship was also found between influenza vaccination and asthma severity (p=0.001). Conclusion Considering the fact that influenza infection may cause increased risk for more severe and more frequent viral lower respiratory tract infection in asthmatic patients, developing an effective intervention program working in harmony to control and reduce the burden of asthma in community is highly recommended. واژههاي كليدي : آسم - رجیسرتی - آنفلوآنزا

94 Designing and implementation of biological sample repository for cancer patient in Golestan province of Iran: The Golestan Cancer Biobank (GoCB)

Fatemeh Ghasemi-kebria1, Nastaran Jafari-Delouie1, Isan Gharanjic1, Elnaz Tagh- vaie1, Zahra Babapalangi1, Taghi Amiriani1, Alireza Norouzi1, Mohammad Ashaari2, Fatemeh Manzari2, Esmail Naeimi-Tabiei2, Abdollah Pooshani1, Seyyedeh_Fatemeh Mousavi-Emadi1, Masoud Khoshnia1, Farhad Kor3, Sima Besharat1, Mohammad Naeimi-Tabiei3, Hossein Poustchi4, Shahryar Semnani1, Gholamreza Roshandel1, Abdolreza Fazel5, Reza Malekzadeh4 1- Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran 2- Department of Pathology, Golestan University of Medical Sciences, Gorgan, Iran 3- Cancer Research Center, Golestan University of Medical Sciences, Gorgan, Iran 4- Digestive Oncology Research center, Digestive Disease Research Institute, Tehran University of Medical Sciences, Tehran, Iran 5. Omid Cancer Research Center, Omid Preventive Medicine and Health Promotion center, Golestan University of Medical Sciences, Gorgan, Iran Abstract Background: Establishment of biological sample repositories of cancer patients may help to expand basic research in the field of cancer and consequently will be helpful in cancer control planning. The aim of this paper is to present the process of designing and implementation of Golestan Cancer Biobank (GoCB). Methods: The GoCB office was allocated in a referral cancer hospital in Gorgan, the capital city of Golestan province. Firstly, the GoCB project proposal was designed. It was reviewed and approved scientifically and ethically by the research council and ethics committee of the Golestan University of Medical Sciences. Then, the standard operation procedures (SOP) were developed considering internationally accepted standards and protocols for different phases of the GoCB including sampling, sample processing, sample preservation as well as use of the samples. Then the GoCB lab was equipped by necessary supplies and reagents according to the SOPs. Collection of biological samples were started in early 2017. GoCB collects different types of biological samples including blood, urine and tissue (tumor and normal). We also collect demographic, risk factors and clinical data for cancer patients. GoCB uses specific software for tracking and management of biological samples as well as demographic, risk factors and clinical data. Results: Overall, GoCB collected 1414 different types of biological samples from 11 sources including public and private hospitals as well as public and private outpatient centers, by the end of November 2018. These samples were collected from 579 cancer patients, most commonly cancers of colorectal (29%), stomach (20%), breast (19%) and esophagus (12%). Totally, 25 physicians collaborated for collection of these samples including 7 surgeons, 6 gastroenterologists, 5 pathologists, 2 hematologists/oncologist and 5 physicians from other fields. The types of collected samples include blood and its derivatives (418), urine (299 samples), endoscopy biopsy (189 samples) and surgical resected tissues (508 samples). Conclusion:The GoCB, as a research infrastructure, may play an important role in development of basic cancer research, especially in the field of cancer biology. The GoCB may also be considered as a model of designing and implementation of cancer biobanks in similar lower resources settings. Key words: Biological sample repository, Cancer, Golestan, Iran

95 11-13 December 2 0 1 8

Iranian Asthma Registry: Asthma-related comorbidities of 1456 registered patients

Nastaran Sabetkish1, Mohammad Reza Fazlollahi1, Shahla Kafash Khadivi1, Maryam Mahloojirad1, Masoud Movahedi1, Zahra Pourpak1, Mostafa Moin1 1- Tehran University of Medical Sciences

Abstract Aim: Patients Registry software has a great role in recording the data and follow-up process of each individual. In this regards, we aim to report the last update of asthma registry; using a comprehensive software named Iranian Asthma Registry (IAR). Material and Method Patients were referred to Immunology, Asthma and Allergy Research Institute (IAARI) from 2008 to 2018. After an inclusive visit, their data were gathered and registered. Results A total of 1456 patients were registered in the system from which 456 individuals were aged below 6 years old (37.5%); while 786 (54%) and 97 (6.7%) cases were aged 6-18 years old and above 18 years old, respectively. Female patients compromised 63.1% (n=919) of participants and 509 cases were male (35%). Rhinosinusitis/sinusitis was the most common comorbidity being found in 329 patients (22.6%). Statistical analysis revealed that 195 individuals had a history of gastrointestinal reflux (13.46%). A total of 14 patients suffered from chronic depression (0.96%) from these 10 patients were aged more than 18 years old. Obstructive sleep apnea was detected in 14 cases from this 4 individuals were less than 6 years old, 5 children aged below 6 years old, and 5 cases were aged more than 18 years old. Allergic bronchopulmonary aspergillosis (ABPA) was detected in only 2 individuals aged 6 to 18 years old. Conclusion Considering the fact that asthma-related comorbidities my make asthma worse and harder to control, developing an effective intervention program working in harmony to control and reduce the burden of asthma in community is highly recommended. واژههاي كليدي : آسم - رجیسرتی

Stroke in-hospital survival and its predictors: The first results from Tabriz Stroke Registry of Iran

Reza Deljavan-Anvari1, Mehdi Farhoudi2, Homayoun Sadeghi-Bazargani3 1- Tabriz University of Medical Sciences Email: [email protected] 2- Tabriz University of Medical Sciences Email: [email protected] 3- Tabriz University of Medical Sciences Email: [email protected] Abstract Objective: The aim of this study, as the first analytical report from Tabriz Stroke Registry, was to determine the in-hospital survival of patients referred to the two stroke centers in North-West of Iran during a full seasonal year from April 2015. Methods: All the consecutive patients with stroke admitted to the two main stroke centers at Tabriz (Imam Reza university hospital and Razi university hospital) were recruited in this study. Stroke patients from both ischemic and hemorrhagic subtypes were selected based on the registry data and ICD 10. At admission, details of examination including vital signs, neurologic and systemic examination, Modified Rankin Scale (MRS), and Glasgow Coma Scale (GCS) were recorded. Baseline hematological and biochemical parameter assessments as well as computerized tomographic scanning were conducted. Cox regression was used to investigate and detect potential predictors of in-hospital survival. Results: A total of 1990 patients with stroke were studied. Men comprised 52.1 %( 1036) of the subjects. Mean age was 65.8. 357(17.9%) had hemorrhagic stroke vs. 1633(82.1%) ischemic stroke. In-hospital case fatality proportion was 12.5% (95% CI:11.1-14). Based on MRS at admission, 1990(69.2%) had

96 a poor outcome at the admission time. The regression analysis showed that at least 7 variables could independently predict hospital survival of patients with stroke including age>=65, higher admission MRS score, lower admission GCS score, hemorrhagic stroke nature, diabetes, having valvular heart disease and having aspirative pneumonia. Conclusion: The case-fatality of stroke in present study setting is high needing to be appropriately addressed through prevention or management of some of these factors such as diabetes, pneumonia and valvar heart diseases. This article has been published in nternational journal of general medicine 11, 233 Keywords : Stroke, Mortality, hemorrhagic stroke, ischemic stroke, prognostic models

Design, localization and implementation of an integrated system for oncology data registry and analysis zohreh alipour1, reza khajouei2*, arefe ameri3, fatemeh varshoei tabrizi4, madieh dayyani5 1-M.Sc. Student of Health Information Technology. Faculty of Management and Health Information Sciences Kerman University of Medical Sciences, Kerman, Iran; Reza Radiotherapy and Oncology Center, Mashhad, Iran; PAYESH Electronic Health Institute, Mashhad, Iran. Email: [email protected] 2- Medical Informatics Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran; Department of Health Information Sciences, Faculty of Management and Medical Information Sciences, Kerman University of Medical Sciences, Kerman, Iran; Email: [email protected]. 3- M.Sc. Student of Health Information Technology Faculty of Management and Health Information Sciences Kerman University of Medical Sciences, Kerman, Iran Academic Email: [email protected] 4- Radiotherapy Specialist, Reza Radiotherapy and Oncology Center, Mashhad, Iran. Email: [email protected] 5- Radiotherapy Specialist, Reza Radiotherapy and Oncology Center, Mashhad, Iran. Email: dayyani.mahdieh@gmail. com Abstract Today, despite the many benefits of information registry systems, the process of implementation them at health care provider centers requires time, cost, expertise, knowledge and awareness. Therefore, many global organizations in specific fields have created open source software that are available for specialized organizations to design and localize them. The purpose of this study was to design, localization and implementation of an integrated system for oncology data registry and analysis for Reza Radiotherapy and Oncology Center of Mashhad in 2016-2017 in 3 stages. Firstly, the standard and essential cancer registry data set (64 items) and the data needed to design a data dictionary for a cancer registration system was identified. Secondly, with application standard classifications and nomenclature systems, content required for a cancer registration system was prepared. Then with localization, translation and specialization CanReg5 software, made it suitable for the position, culture and features of Iran, And finally, the system was tested based on the predefined scenario. In this study, the findings from testing the integrated system for oncology data registry and analysis, showed that this system meets the information requirements for cancer registry data and allows conducting descriptive studies and analytical research on cancer. Key words: Software localization, Registry system, Cancer registry, Cancer, Oncology

97 11-13 December 2 0 1 8

Cardiovascular patients Adherence for clopidogrol after primary PCI during 1 year followup priod. report of web based admitted registration system in yazd province

Abbas Andishmand, Mahsa Mahdavi.Seyedeh Mahdieh Namayandeh,Seyed Hadi Ghasemi Zavieh Sadat, Mohammad Hosein Soltani, Leila Hadiani, Hamid Reza Deh- ghan, Ali Pedarzadeh, Seyed Mostafa Seyed Hosseini, Mohamad Hosien Abdollahi. Yazd cardiovascular research center, yazd university of medical sciences, Medical informatics department, mashahd medical university. Corresponded author: seyedeh mahdieh namayandeh MD PhD, epidemiologist. yazd cardiovascular research center, [email protected] Abstract Antiplatlet therapy is the corner stone of CVD patients treatment after pulmonary PCI for prevent of clot for in stent specially during 1 year after PPCI: To evaluated of drug Adherence of clopedigrol in CVD patients of PPCI after acute STEMI acute ST elevation myocardial infarction. Methods & Material: We study on 300 case of acute STEMI patients Yazd web based from CVD registrant system & follow up in (YCDR)Yazd province with underwent PPCI these patient followed up during 1 one year. Results: All of 291 patients with acute ST elevate myocardial infarct (STEMI) that underwent primary PCI (perqutenes coronary intervention) That registered in Yazd web based CVD registrant system (YCDR) was enrolled in this study. (240) 82.5% were male the one-year in increase of MACE (Major Adverse Cardiovascular Event) was seen in 48 (16.4%) the causes were MI 2(0.7%), stroke 2(0.7), repeat admission 17(6.2) with unstable angina, repeat PCI 7(2.6), CABG 10(3.6) & 10(3.6) death was happen. Drug adheres of plavix drug 1 month was 87.3%, and during 1 year was 83.5% the cause of drug disrupted was high cost of drug 12.5(6), due to low awareness &54% (26) drug complicate and 21.5% and other cases means survival time of plavix use was 339.84-5.34 (341.2+5.77 in male & 33.3+13.7) in female. (P<0.05) Conclusion: One-Year survival rate of these pates was 96.4% (1.6% (4) in full drug adheres & vs 13.6(3) in no compliance. P (0.014) One-Year full dug adheren was 83.5% can in survival rate significantly.

98 Assessing the adequacy of diagnostic data for neoplasms in the death certificates for the cancer ‎registration program and submit solutions to improve it Maria Cheraghi 1, Javad Zarei2*, Maryam Asgarnejad3, Sara Sakipour4, Moslem Aein- parast5 1-Associate Professor, PhD of Health ‎Information Management, Ahvaz ‎Jundishapur University of Medical Sciences, Ahvaz, Iran ‏(‏[email protected]‏)‏ 2-Assistant Professor, PhD of Health ‎Information Management, Ahvaz ‎Jundishapur University of Medical Sciences, Ahvaz, Iran ‏(‏[email protected]‏)‏ 3-BA of Medical Record. Imam Sajad Hospital, Mazandaran University of ‎Medical Science, Ramsar, Iran ‏(‏asgharnejad. [email protected]‏)‏ 4-BA of Medical Record, Vice-Chancellor for Treatment, ‎Ahvaz Jundishapur University of Medical‎ Science, ‎Ahvaz, Iran ‏(‏[email protected]‏)‏ 5-BA of Medical Record, Vice-Chancellor for Treatment, Lar University of ‎Medical Science, Lar, Iran ‏(‏[email protected]‏)‏ * Corresponding author: Associate Professor, PhD of Health ‎Information Management, Ahvaz ‎Jundishapur University of Medical Sciences, Ahvaz, Iran ‏(‏[email protected]‏)‏ Tel: +989163230481 Introduction: In Iran, one of the most important registries of diseases and health outcomes is the cancer registry program. The main sources for data collection in the cancer registry program are pathology centers, hospitals and death certificates. Because of access to the patient and his medical records at the pathology centers and hospitals, it is usually possible to record the minimum data required for the cancer registry program. But in the case of recording data from a death certificate, the only data source available to record cancer is the death certificate. Therefore, the adequacy of diagnostic data for cancer in the death certificate is important. The aim of the study was to survey the adequacy of diagnostic data for neoplasms in the death certificates for thecancer ‎ ‎registry program and submit solutions to improve it. Methods: The present study was an applied study conducted in 2018 in three stages. The first stage, with the cooperation of experts in the field of death registration in five Iranian universities of medical sciences, 194 death certificates with neoplasm diagnosis was examined. The research tool was a checklist based on information on tumor characteristics in the cancer registry program. Data were collected by observation method and analyzed using descriptive statistics. . In the second stage, based on the findings of the first stage, the problems associated with the documentation of neoplasms in death certificates are determined. Then, using a qualitative study and a half-structured interview with physicians, the reasons for the defects in the documentation of neoplasms were identified in the death certificate. In the third stage, based on the findings of the previous stages, recommendations for improving the documentation of cancer diagnosis in the death certificate were proposed and submitted to the experts. Delphi technique was used to validate the recommendations. Finding: The findings of the first stage of the study indicated a high degree of defect in the documentation of neoplasms in death certificates. Accordingly, the most serious deficiencies were the lack of record of tumor differentiation (100%), morphology of neoplasms (79%), primary site in cancers (37%), attention to the sequencing of causes of death for cancer reporting as the cause of death (35%), mention behavior of neoplasm (11%) and illegibility of diagnosis in death certificates(5%). In the second stage, the analysis of the content of the interview with the physician showed that the most important causes of defects in diagnosis documentation were respectively, unavailability of medical records at the time of certification of death, certification of death by physician other than the most responsible physician, inadequate training of correct documentation principles of the causes of death to physicians at the time of education, and physicians' concerns about legal issues in documenting the details of diagnosis on the causes of death. In the third stage, in two Delphi rounds, out of a total of 15 proposed solutions, 10 were certified by experts. Conclusion: Due to defects in the documentation of neoplasms in the death certificate and their structural causes, the death certificate data are not sufficient for the cancer registry program. The use of suggested solutions can greatly help to solve this problem. Keyword: Cancer, Disease Registry, Cancer Registry, Death Certificate 99 11-13 December 2 0 1 8

Cardiogenic shock incidence and mortality in STEMI: (ST elevation myocardial infarction

Abbas Andishmand, Seyedeh Mahdieh Namayandeh , Leila Hadiani, Hamid Reza Deh- ghan, fariba herandi, fatemeh gholami, Corresponded author: seyedeh mahdieh namayandeh MD PhD, epidemiologist. yazd cardiovascular research center, [email protected] Abstract Introduction: Ischemic heart disease (IHD) is the leading cause of death and years of life lost in Iran and most of the countries of the world. Prevention programs nationally and internationally are trying to reduce the burden of this disease. Using a reliable and integrated index which is constantly attainable and measurable is necessary to evaluate the effectiveness of prevention and treatment programs. With the establishment and starting up the national document of non-communicable diseases with the confirmation from WHO in the country, Yazd university of medical science has put reaching to this index through improving the registration systems in its main programs. As a result Yazd cardiovascular research center started to design and establishment of web based registry of IHD in admitted patients. This the second report of this system development and implementation in Yazd province. As a result we can share our data with other registries at national and international so we can compare our result with them and use it in health promotion policy. On the other hand IHD registry data can be use in education of cardiology residences and research goals. Methods and materials: IHD record forms development and pilot study: We needed to have IHD outcome definition, valid and reliable variables within YCDR(Yazd cardiovascular disease registry ) forms. So we design 4 YCDR form contain Two events: : •Acute myocardial infarction (ST elevation and non ST elevation), •Decompensate Heart failure (ischemic heart failure) Three Procedures: PCI, •Coronary Artery bypasses Surgery (CABG), •Coronary artery catheterization (coronary angiography. •Acute myocardial infarction (ST elevation and non ST elevation), We considered all variables compatible to Persian, European and American IHD registration systems. Results:About 1929 pateints with acute MI was registered during 1 year.58.8% (1328) patients was STEMI. 25 PATIENTS were in killip IV situation at admission time. Patient with cardiogenic shock were significantly more female. We saw cardiogenic shock in 3.9% of female and 2.1 % male. P =0.035. STEMI was seen in 80% of cardiogrnic dhock patients. Mean age of cardiogenic shoc patients was 67+12 vs. 63+12. P=0.14 21.9% underwent PPCI. Systolic and diastolic blood pressure at admission time were significantlu lower than the othr patients. P<0.001. mortality rate of cardiogenic shock was 69.5% vs. 7% p=0.001.

100 conclusion : about 2% of patients underwent carcinogenic shock during acute MI, with very high mortality rate. Carcinogenic shock is seen more in female and elderly patients with low blood pressure at admission. Cardiogenic shock, ST elevation myocardial infarction., disease registry, ischemic heart disease, web based comprehensive system development

Cancer Incidence in East Azerbaijan – Iran in 2015-2017: Results of The Population-Based Cancer Registry

Mohammad Hossein Somi1, Roya Dolatkhah2, Sepideh Sepahi3, Mina Belalzadeh4, Behnoush Abedi-Ardekani5, Arash Etemadi6 1- 1. Liver and Gastrointestinal Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 2- 2. Hematology and Oncology Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 3- 2. Hematology and Oncology Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 4- 2. Hematology and Oncology Research Center, Tabriz University of Medical Sciences, Tabriz, Iran 5- 3. WHO International Agency for Research on Cancer, Genetic Cancer Susceptibility Group, Lyon, France 6- 4. Division of Cancer Epidemiology and Genetics, National Cancer Institute, , NIH, Bethesda, MD, USA 5. Digestive Oncology Research Center, Digestive Disease Research Institute, Tehran University of Medical Sciences, Tehran, Iran Abstract Background and Aims East Azerbaijan in Iran is an endemic area for gastrointestinal cancers. In this study, we aimed to determine the crude and standardized incidence rates of cancers in this Province from March 2015 to March 2017. Material and Methods The methodology used for the East Azerbaijan population-based cancer registry was based on the operational program of the National Cancer Registry. Cancer registration software (can.reg) was installed with the aim of recording all the data of patients with cancer and to connect with their electronic health records system. The registered data were all population-based and obtained from multiple sources. Results We observed 6655 incident cases for the first year, and 7042 incident cases for the second year (13697 total incident cancers). Males accounted for 7644 (55.8%) of the cases and females accounted for 6053 (44.2%). The overall mean age at diagnosis was 60.34±17.55 years. The age standardized incidence rates (ASIR) per 100,000, for all cancers was 165.29 for men, and 132.35 for women, with crude incidence rates of 174.7 and 147.1 for males and females, respectively. During the two years of study, the five most common cancers in men were stomach, colorectal, prostate, bladder, and trachea, bronchus and lung cancers (ASIRs: 27.58, 19.23, 18.64 , 18.63, and 13.26, respectively) , and for women breast , colorectal , stomach , thyroid , and esophageal cancers (ASIRs: 31.44 , 14.64, 11.91, 9.10 , and 7.02, respectively). Conclusion Our results were consistent with the previous reports, and the geographical pattern of cancer incidence in Iran, with gastrointestinal cancers, especially gastric cancer, being among the most common cancers in both sexes. Keywords : Cancer Incidence; Population Based; Cancer Registry; Iran

101 11-13 December 2 0 1 8

Demograohic and clinical status of patients with beta-thalassemia major -the registry - Thalassemia Research Center 2018

Mehrnoush Kosaryan1, Hadi Darvishi-Khezri2, Hossein Karami3, Aily Aliasgharian4, Rosetta Akbarzadeh5 1- Professor In pediatrices, Thalassemia Research Center, Mazandaran University of Medical Sciences, Sari,Iran Email: [email protected] 2- Phd In Research, Thalassemia Research Center, Mazandaran University of Medical Sciences, Sari,Iran Email:[email protected] 3- Associate Professor in pediatrics hematology and oncology, Thalassemia Research Center, Mazandaran University of Medical Sciences, Sari,Iran Email: [email protected] 4- Msc in medical microbiology, Thalassemia Research Center, Mazandaran University of Medical Sciences, Sari,Iran Email:[email protected] 5- MD, Thalassemia Research Center, Mazandaran University of Medical Sciences, Sari,Iran Email:r_akbarzadeh_md@ yahoo.com Abstract ســابقه و هــدف: طــرح پیــش گیــری از تولــد بیــاران تاالســمی مــاژور در ایــران از ســال 1376 رشوع شــد. اســتان مازنــدران در زمینــه انجــام و تحقــق اقدامــات پیشــگیرانه از تولــد بیــاران تاالســمی مــاژور موفــقبــوده اســت. مطالعــه حــارض، گــزارش وضعیــت دموگرافیــک و بالینــی بیــاران بتــا تاالســمی ثبــت شــده در ســامانه ثبــت اطلعات بیــاران بتاتاالســمی دانشــگاه علــوم پزشــکی مازنــدران )مرکــز تحقیقــات تاالســمی( اســت. مــواد و روش: نــرم افــزار تحــت وب THRegistry(Mazandaran Thalassemia Registry( مبتنــی برپلتفــرم Net Framework بــه زبــان VB.Net و بانــک اطلعاتــی 2014Sql Server بــه آدرس thr.mazums.ac.ir طراحــی شــد. منبــع اطلعــات پرونــده بالینــی موجــود در14 بخــش تاالســمی در بیمرســتان هــای اســتان بــود. اطلعــات اپیدمیولوژیــک بیــاران همــراه بــا اطلعــات بالینــی آنهــا ثبــت شــد. یافتــه: 1941 بیــار شــامل، 946 )78/50%( زن و 917 )22/49%( بــا میانگیــن ســنی 3/10 ± 32 ســال و مشــابه بــرای هــردو جنــس بــود. 218 بیــار متولــد بعــد از رشوع طــرح کشــوری پیــش گیــری از بیــاری )1376( شناســایی شــده انــد. در 123 مــورد از خدمــات PND اســتفاده نشــده بــود، در 8 مــورد دیگــر اشــتباه بــودن نتیجــه PND و در 6 مــورد PND انجــام شــد امــا ســقط صــورت نگرفتــه بــود. تعــداد 1416 بیــار )1/73%( وابســته بــه تزریق خــون بودنــد. میانگین فریتیــن بیــاران برابــر بــاng/dl 3194±1804 می باشــد. میانگیــن هموگلوبیــن بیــاران  3/2 6/8 گــرم در صــد میلــی لیــرت خــون بــود. 548 بیــار )2/28 درصــد( ســطح تحصیــات دیپلــم داشــتند. 554 نفــر )5/28 درصــد( ســطح تحصیــات بــاالی دیپلــم داشــتند. 650 نفــر )5/33 درصــد( شــاغل هســتند. تعــداد 807 نفــر )6/41%( از بیــاران متاهــل هســتند. 482 نفــر از ایــن میــان بیــاران، دارای فرزنــد هســتند )6/82% از متاهــل هــا و 8/24% از کل بیــاران(. میانگیــن ســن بیــاران بتــا تاالســمی فــوت شــده تــا ســال 97 برابــر بــا 11±1/38 مــی باشــد. از ســال 95 تــا زمــان گــزارش 30 بیــار فــوت منودنــد )19 مــرد و 11 زن( کــه در 24 مــورد علــت مــرگ عــوارض ناشــی از بیــاری تاالســمی بــود. اســتنتاج: داده هــای رجیســرتی )data registry( منبــع مناســبی بــرای آگاهــی از وضعیــت بیــاران، کمــک در برنامــه ریــزی هــای بهداشــتی-درمانی، سیاســت گــذاری هــا، طراحــی مطالعــات توصیفــی و کوهــورت، مطالعــات بقــا، کمــک بــه درمانگــر تاالســمی و پیگیــری موفقیــت طــرح پیشــگیری از تاالســمی مــاژور اســت. هايواژه كليدي : بتا تاالسمی ماژور- سامانه ثبت الکرتونیک- رجیسرتی- تحقیقات توصیفی- تحقیقات کوهورت- درمان- پیش گیری. Biobanking in Echinococcosis, experiences from a running registry program

Saeid Nasibi1, Faranak Jahandari2,Mohammad Ali Mohammadi3, Ali Derakhshani4, Majid Fasihi Harandi5 1 National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 2 National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 3 National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] 4 National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran [email protected] 5 National Registry of Hydatid Disease, Research Center for Hydatid Disease in Iran, Kerman University of Medical Sciences, Kerman, Iran Email: [email protected] Abstract Biobanks related to infectious diseases are valuable biological resources for development of cutting edge biomedical research and improving quality of care. Echinococcosis (CE) and hydatid

102 disease is a globally distributed parasitic infection. Annual direct and indirect costs of human and animal infections in Iran is estimated at US$ 232.3 million. Iranian registry of hydatid disease established in 2013 by the Research Center for Hydatid Disease in Iran at Afzalipour Medical Center in Kerman. Along with the National Registry of Hydatid Disease, systematic biobanking of hydatid-related specimens has been running since March 2018. To get Ethics approvals were obtained from the Ethics Review Committee in Kerman University of Medical Sciences. All forms and standard operating procedures (SOPs) were prepared and the staff were especially trained for this purpose. Four different biological specimens were entitled in the biobank. Two-dimentional barcoding system was used to identify cyst membranes, protoscoleces, serum and whole blood. The storage system in the present biobank includes -70 oC. Patient information including birth date, location of residence, contact details, clinical data and cyst characteristics were recorded in a specially designed software. Our experiences indicate that simultaneous implementation of disease registry program along with the corresponding collection of biological samples in the form of an integrated biobank can play an important role in the improvement of biomedical research and disease control policy making. Keywords: Biobank,Echinococcosis, Hydatid, Registry The Commencement of Congenital Heart Disease Registry in Isfahan- Iran: Methodology and Design

Bahar Dehghan1, Mohammad Reza Sabri2, Mohsen Hosseinzadeh3, Alireza Ahmadi4, Mehdi Ghaderian5, Nizal Sarafzadegan6, Hamid Reza Roohafza7 1- Assistant professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 2- Professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 3- Assistant professor of pediatrics, Pediatric Cardiology Department of Pediatrics, School of Medicine, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran 4- Associate professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 5- Associate professor of pediatric cardiology, Pediatric Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 6- Professor of cardiology, Isfahan Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran 7- Assistant professor, Cardiac Rehabilitation Research Center, Cardiovascular Research Institute, Isfahan University of Medical Sciences, Isfahan, Iran Abstract Reported prevalence of CHDs (Congenital Heart Diseases) varies widely among studies worldwide. The incidence of CHD, total number of pediatric and adult Grown Up Congenital Heart disease (GUCH) is not determined in Iran. So, we have designed a system to register the information of patients with CHD for the first time in our country. CHD registry is a database in which the patients data from hospitals or outpatient clinics are collected. We enrolled referrals from either new patients had come for evaluation of potential CHD or those who are being followed within the out patients clinics and entered their whole information in a website specifically designed for. All the information were collected from questionnaires by pediatric cardiologists as principle investigators. From Apr 2017 to Nov 2018, after developing the forms and website, the first 558 files were evaluated by the quality control committee. 73 files (%13) needed major revisions. Among them, 34 (%46) files were omitted totally and the 39 remaining files were revised and completed. After that revision we have changed our questionnaire and gathered 1200 patients accordingly. Registry of CHDs not only improves epidemiologic studies but also assists researchers to understand how much a disease management is useful and how to raise the quality of cares and outcomes. Moreover, this provides a better insight for policy makers to understand the extent of health-related problems as well as the issues related to the prevention and managements of congenital heart diseases all around the world. Keywords : registry, Congenital Heart Diseases, Data Collection 103 11-13 December 2 0 1 8

National Trauma Registry of Iran: The pilot phase at Sina Hospital

Melika Khaleghi-Nekou1, Khatereh Naghdi2, Mohammadreza Zafarghandi3, Payman Salamati4, Mahdi Sharif-Alhoseini5, Vafa Rahimi-Movaghar6 1- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran- melika.khaleghi@ymail. com 2- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran- khaterehnaqdi@gmail. com 3- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran- [email protected] 4- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran- [email protected] 5- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran- sharif.mahdi@gmail. com 6- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran- [email protected] Abstract Introduction In Iran, trauma is a prominent cause of morbidity and mortality. The burden of injuries has been significantly decreased in many developed countries in recent years by the establishment of a trauma system in which trauma registry had been its vital component. Trauma registry is a dedicated database system to assess and develop the quality of care, clinical guidelines, and injury prevention policies. This study aimed to describe the results of the pilot phase of the national trauma registry of Iran (NTRI) at a referral university trauma center in Tehran. Methods The study was performed at Sina hospital in Tehran, Iran from August 1 to September 30, 2016. Patients who had the NTRI criteria including: hospital length of stay (LOS) more than 24 hours, death after injury, or transfer from intensive care units of other hospitals. 109 data variables were analyzed including demographics, medical care information, injury characteristics, and outcomes. Data forms were filled and uploaded to the NTRI web-based portal by three dedicated registrars and one trained reviewer checked the entered data for completeness, accuracy, and consistency. Results Over 2 months, 171 patients, predominantly males (87.1%) with an average age of 37.2 (±19.5) years were registered. The most common mechanism of the injury was road traffic crash (RTC) (53.2%), followed by fall (21.1%) and penetrating injuries (18.7%). RTC represented a remarkable proportion of the injuries with higher injury severity score (ISS) (P=0.046). The mean hospital length of stay (LOS) was 9.8 (±12.2) days. There were significant relationships between the GCS (P=0.03), drug abuse (P=0.05), and ISS (P=0.008) as independent variables and LOS. 21.6% of the patients were admitted in ICU, with a larger proportion of fall injury (44.4%)(P=0.002). Eight patients (4.7%) died during hospitalization, of which 7 cases were male. There was a significant association between increasing age and ISS with death outcome. Conclusion The pilot phase of the NTRI in Sina Hospital showed that RTC was the leading cause of injury-related hospitalization, followed by fall and penetrating injuries. RTC represented a remarkable proportion of the injuries with higher ISS. Although ambulance response time was acceptable, there was a long time interval between injury occurrence and hospital admission. This study demonstrated a significant association between ISS with LOS and death. These findings can be used to improve quality of trauma care and formulate targeted preventive strategies. Keywords : Data Systems, Medical Records, Registries, Wounds and Injuries

104 National Trauma Registry of Iran: The pilot phase at Sina Hospital

Khatereh Naghdi1, Marjan Laal2, Mohammadreza Zafarghandi3, Payman Salamati4, Mahdi Sharif-Alhoseini5, Melika Khaleghi-Nekou6, Vafa Rahimi-Movaghar7 1- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. khaterehnaqdi@gmail. com 2- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. [email protected] 3- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. [email protected] 4- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. [email protected] 5- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. sharif.mahdi@gmail. com 6- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. melika.khaleghi@ymail. com 7- Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. [email protected] Abstract Introduction Many traumatic scoring systems have been developed to determine the severity of injury. Injury severity score (ISS) is the most common system that used. ISS is calculated by adding up the squares of 3 most severely injured organs, described as abbreviated injury score (AIS) that includes about 2000 injuries in 9 body regions (head, face, neck, thorax, abdomen, spine, upper extremity, lower extremity, and external). Injury severity is graded from 1 to 6 numbers, where the 1 reflects the least and the 6 shows the most severity of organ injury. This study aimed to assess the pattern of trauma, injury severity and to find any relation between ISS and variables of: length of hospital stay (LOS), intensive care unit (ICU) stay, and mortality. Material and method This prospective study is the result of first part of National Trauma Registry of Iran (NTRI). All trauma patients referred to Sina Hospital which is a level I trauma center, from 23th July 2016 to 20th March 2017 are included. In this research inclusion criteria were: those hospitalized ≥24 hours in Sina hospital, patients died in the first 24 hours at hospital, and all whom being referred from other centers. One hundred-nine variables were analyzed by means of chi square tests, correlation coefficients, logistic regression, OR- index and t-tests. Results This study included 875 trauma patients with male predominance (86.7%). Age ranged from 2 to 95 years old (mean= 38.94±19.77). Most of the patients (58.1%) were <40 years. Most frequent mechanisms of injury were: 467(53.4%) road traffic crashes (RTCs), 199(22.7%) falls, and 137(15.7%) penetrating injuries. ISS range was 1-50 (mean=5.7, SD±4.4). ISS had significant relationships (p<0.001) with some demographics, as; age groups, marital status, levels of education and nationality. We found significant correlation between ISS and LOS (R=0.25, P<0.001) and ICU stay (R= 0.29, p<0.001). Thirty three (3.8%) of patients died. Significance (p<0.001) was between ISS and mortality. Conclusion In this study, most trauma victims were men and young, between 10-49 years old. The most leading cause of injury was RTCs, followed by falls, similar to other studies in the country of Iran. In our survey, there was significant relationships between ISS and age, marital status, and the levels of education in trauma patients. In this research scoring system of ISS, was well correlated to length of ICU stay, LOS and mortality. Keywords : injury severity score, trauma, injury, mortality.

105 11-13 December 2 0 1 8

Epidemiology of lymphoma in Northern Iran: Results of the Golestan Population-based cancer Registry, 2004-2013

Nastaran Jafari-Delouie1, Mohammad Naimi-Tabiei2, Abdolreza Fazel3, Mohammad Ashaari4, Ehsan Hatami5, SeyedMehdi Sedaghat6, Mohammad Poorabbasi7, Susan Hasanpour-Heidari1, Fatemeh Ghasemi-Kebria1, Abbas Moghaddami3, Masoomeh Gholami7, Gholamreza Roshandel1 1. Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran 2. Cancer Research Center, Golestan University of Medical Sciences, Gorgan, Iran 3. Omid Cancer Research Center, Omid Preventive Medicine and Heath Promotion Center, Golestan University of Medical Sciences, Gorgan, Iran 4. Department of Pathology, Sayyad Shirazi hospital, Golestan University of Medical Sciences, Gorgan, Iran 5. Mirdamad Radiotherapy and Chemotherapy Center, Gorgan, Iran 6. Deputy of Public Health, Golestan University of Medical Sciences, Gorgan, Iran 7. Death Registry Unit, Deputy of Public Health, Golestan University of Medical Sciences, Gorgan, Iran

Abstract Introduction: The aim of this paper was to present the incidence rates as well as the time and geographical variations of lymphomas in Golestan province during the 10-year period. Method: Data on newly diagnosed lymphomas during 2004-2013 were obtained from the Golestan Population-based Cancer Registry database. Crude rates and age standardized incidence rates (ASR) (per 100,000) of lymphomas were calculated. Joinpoint regression analysis was used to assess temporal variations in incidence of lymphomas during the study period. Average annual percent changes (AAPC) were calculated. Result: In total, 898 new cases of lymphoma were registered in the GPCR during 2004-2013. The ASR of Hodgkin lymphoma (HL) was 1.5 and 1.1 in male and female, respectively. The ASR of non-HL (NHL) was 6.5 and 3.4 in male and female, respectively. Our results suggested significant difference in time trend of HL between male (AAPC= -3.2) and female (AAPC=3.6) (p-value =0.001). The incidence rates of lymphoma were considerably higher in urban population (ASR=7.3) comparing to residents in rural area (ASR=5.3) (p-value=0.05). We found high incidence rates areas (hot points) for both HL and NHL in Western parts of Golestan province. Conclusion: We found high incidence rates of lymphoma in Golestan province. Our finding showed geographical disparities in incidence of lymphomas in Golestan province, toward higher incidence rates in Western area. These differences may reflect differences in life style and environmental factors as well as ethnic variations between the two areas. Further studies should be conducted to assess risk factors of lymphomas in our population. Key words: Epidemiology, Hodgkin lymphoma, non-Hodgkin lymphoma, Golestan, Iran

106 Privacy Information in the Registry and health outcome: a systematic review

Zohreh Shoyukhi 1 , Maryam Morshedian 2 , Maryam Jafar Jalali 3 , Hamid Reza Sham- lou 4 , Sayed Abbas Sadat Hosseini 5 Hamid Reza Dehghan 6 -Mahdi Aghabagheri7 1 [ Iran , Yazd, School of Public Health, Shahid Sadoughi University of Medical Sciences , Yazd, Iran . zohreh.shoyukhi@ gmail.com ] 2 [ Iran , Yazd, School of Public Health, Shahid Sadoughi University of Medical Sciences , Yazd, Iran . [email protected] ] 3 [ Iran , Yazd, School of Public Health, Shahid Sadoughi University of Medical Sciences , Yazd, Iran . [email protected]] 4 [ Iran , Yazd, School of Public Health, Shahid Sadoughi University of Medical Sciences , Yazd, Iran . [email protected] ] 5 [ Iran , Yazd, Department of Ethics, Shahid Sadoughi University of Medical Sciences , Yazd, Iran . a.sadathosseini@ssu. ac.ir ] 6 [Iran , Yazd, School of Public Health , Shahid Sadoughi University of Medical Sciences , Yazd, Iran . hamidreza. [email protected] ] 7-Mahdi Aghabagheri. Consultation Center for Secondary Researches, Data Mining, and Knowledge Transfer in Health and Medical Sciences, Shahid Sadoughi University of Medical SciencesYazd, [email protected] Abstract Objective: This study is to achieve the principles of confidentiality of information in registries Method This study was based on disease registries and the health implications to achieve the confidentiality of information in registries, all of which was published in the Pubmed database up to November 10, 2018. The process of searching and data analysis in this study was based on the PRISMA P Standard Guide. The search and extraction of articles were done by a team of four members. The extracted articles were divided into four sections and individually reviewed by each person . Then each part was examined by the second person and the differences between them were resolved, and regarding any difference, the third person was involved in settling the challene. In this systematic review, regarding a three-step approach, all published articles without time and place constraints in all languages using the key words of the ethics and the registry, considering MeSH with the strategy ("Registries" [Mesh]) AND "ethics" [Subheading] were searched. Results:In total, 374 articles were extracted. After applying the entry and exit criteria, 15 papers were found to be consistent with the objectives of the study, which were independently evaluated by two members of the research team Conclusion : In general, the protection of personal information is divided into ten principles, which are well described in the Canadian Association for Standardization Privacy Policy. Confidentiality issues should be carefully considered in three important steps: at collection time, during storage, and at the time of use, the collection restriction restricts the amount of data collected to be limited to the identified identified goals. This principle requires a registry collects the minimum amount of data needed to reach its goal. If contact information is not available to volunteers or related to study criteria, they should not be collected. Identification of relevant data should be done by an international consortium with a high level of expertise in diseases that are targeted by the registry. The findings of this study indicate despite the importance and information privacy issues mentioned in numerous articles, the ethical evaluation principles of registries are not mentioned, so it is necessary to conduct a moral evaluation and compilation of a checklist for the evaluation of registries. Keywords : Information privacy ; Registry ; System review

107 11-13 December 2 0 1 8

A study on Principles of informed consent in the Diseases Registry

Khalil Kimiafar1, Masoumeh sarbaz1, Fereshte Manouchehri Monazah2*, Alireza Ban- aye Yazdipour2, Mojtaba Hashemi Hasani2, Najmeh Shariati2 1-Assistant Professor, Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran 2-Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran *Corresponding Author: [email protected] Abstract Introduction:With the advancement of information technology and the growing trend of some diseases, the need to design and create a registry for various purposes has increased. Due to the fact that the data of registry is often extracted from patients' record, one of the important issues in this regard is the patient's ethical principles, privacy and confidentiality. One of the patients’ rights in this area is informed consent. Therefore, the purpose of this study was to investigate the principles of informed consent in the diseases registry. Methods:This research was reviewed in 2018 by searching databases such as Web Of Science, Google Scholar, Scopus, PubMed with keywords "patient registries", "informed consent", "ethics", "registry research", "health data" and "disease registries". Finally, 9 papers were selected from 2010 to 2018. After collecting related articles, the data extracted from the articles were reviewed by researchers. Results:The findings of this study showed that one of the most important concepts in medical ethics and patient rights was informed consent. Two important principle of informed consent are satisfaction and awareness. The principle of informed consent states that the patient's participation in the registry must be optional and the provision of information by the patient to the registry is optional and voluntary. If the patient was unwilling to participate in the registry, he/she could abandon the registry at any time, for any reason and completely free. In many countries, there are laws that health care organizations are required to obtain informed consent from the patient for reporting patients' registered information in the registry to other institutions. Conclusion:The results of this study showed that informed consent is a moral obligation to design and create a registry. One of the major challenges in obtaining consent from patients participating in patient registries is ensuring that participants receive all the information that they need to make informed decisions and fully understand the consent content. Therefore, it is necessary to provide guidelines for the design and understanding of informed consent. Keywords: registry, informed consent, patients’ rights

Providing the principles of confidentiality, ownership and protocol for the dissemination of patient registries data in Kermanshah University of Medical Sciences. masoumeh abasi1, farid najafi2, yazdan rezaei3, fezollah foroughi4 1- Kermanshah University of Medical Sciences Email: [email protected] 2- Kermanshah University of Medical Sciences Email:[email protected] 3- Kermanshah University of Medical Sciences Email:[email protected] 4- Kermanshah University of Medical Sciences Email:[email protected] Abstract از حقــوق مســلم پزشــک، بیــار و مرکــز درمانــی مشــارکت کننــده در نظــام ثبــت، حفــظ محرمانگــی داده هــا، مالکیــت مراکــز نســبت بــه داده هــای ثبــت شــده توســط آن مراکــز و رعایــت پروتــکل هــای اســتفاده و انتشــار داده هــا توســط پژوهشــگران و مراکــز عضــو

108 مــی باشــد. بــا هــدف پاســخ بــه ســواالت متعــدد و رفــع ابهامــات اعضــای هیــات علمــی دانشــگاه علــوم پزشــکی کرمانشــاه در مــورد قوانیــن انتشــار و مالکیــت داده هــای ثبــت، محققیــن بــه تدویــن اصــول مربــوط پرداختنــد. بــرای ایــن هــدف، ابتــدا بــا بررســی قوانیــن مشــابه در کشــورهای دیگــر ســند اولیــه تهیــه گردیــد. ســپس در 5 جلســه دو ســاعته بــا حضــور افــراد مســئول در معاونــت تحقیقــات و فنــاوری و واحــد ثبــت بیــاری هــا بــه بحــث و بررســی، اصــاح و حــذف هــر کــدام از مــوارد یــا اضافــه منــودن مــورد جدیــد پرداختــه شــد. ســند پیــش نویــس بــرای نظــر ســنجی از اعضــای هیــات علمــی بــرای متــام دانشــکده هــا و اعضــای هیــات علمــی ارســال شــد و نظــرات ارائــه شــده اعــال گردیــد. ســند نهایــی در ســطح دانشــگاه شــامل قســمت هــای ســاختار و تعاریــف در نظــام ثبــت بیــاری هــا و پیامدهــای ســامت، اصــول مالکیــت و انتشــار و ارائــه دادههــا در دانشــگاه علــوم پزشــکی کرمانشــاه، چگونگــی مشــارکت اعضــای کمیتــه راهــربدی در برنامــه ثبــت بیــاری هــا و پیامدهــای ســامت، اصــول نویســندگی در مقــاالت مســتخرج از برنامــه ثبــت بیــاری هــای و پیامدهــای ســامت، رشایــط اســتفاده دانشــگاه علــوم پزشــکی کرمانشــاه از داده هــای برنامــه هــای ثبــت بیــاری هــا و پیامدهــای ســامت دانشــگاهها و یــا مراکــز خصوصــی مختلــف، رشایــط مشــارکت دانشــگاه علــوم پزشــکی کرمانشــاه بــرای ثبــت داده در دیگــر مراکــز مــی باشــد. واژههاي كليدي : نظام ثبت بیمری، مالکیت داده ها، محرمانگی، پروتکل انتشار داده ها

Reviewing the Ethics in Registries; Review Article somayeh fazaeli1, fatemeh kamjoo2 1- Assistant Professor, Medical Records and Health Information Technology Department, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran Email: [email protected] 2- student in Master of Science in health Information Technology , Medical Records and Health Information Technology Department, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad, Iran Email: [email protected] Abstract مقدمــه: اســتفاده مناســب از حجــم زيــاد داده هــاي مربــوط بــه مراقبــت ســامت مســتلزم بهــره گــري از روش هــاي گــردآوري اســتاندارد و مناســب اطلعــات ماننــد اســتفاده از رجيســرتي هــا مــي باشــد. امــا اســتفاده از ايــن سيســتم هــا بــدون توجــه بــه الزامــات اخلقــي و قانــوين مــي توانــد منجــر بــه ايجــاد مشــکلت زيــادي شــود. درايــن مطالعــه ســعي شــده اســت مســائل اخلقــي مرتبــط بــا رجيســرتي هــا مــورد بــرريس قــرار گــرد. روش هــا: ايــن مطالعــه از نــوع مــروري بــوده اســت کــه بــه بــرريس پايــگاه هــاي اطلعــايت معتــرب ماننــد pubmed, google scholarو sciencedirect بــدون محدوديــت زمــاين و بــه زبــان انگليــي و بــا کليــد واژه هــاي ethics,registry,priv acy,confidentiality صــورت گرفتــه اســت. يافتــه هــا: طــي بــرريس هــاي صــورت گرفتــه مطالعــايت در خصــوص الزامــات اخلقــي در رجيســ يرت هــاي رسطــان و ترومــای طنــاب نخاعــی و دیابــت مطــرح شــده بــود. مــواردي کــه در ايــن مطالعــات مــورد تاکيــد قــرار گفتــه بودنــد شــامل شــاخص هــاي محرمانگــی داده هــا وحفــظ حریــم شــخصی بیــار و در دســرتس بــودن داده هــای رجیســرتی هــا بودنــد. در برخــي مطالعــات از عــدم رعايــت مــوارد اخلقــي فــوق در رجيســرتي هــاي مــورد بــرريس ابــراز نگــراين شــده بــود. چالــش هــاي اخلقــي در زمینــه راه انــدازي اســتفاده از رجيســ يرت هــا بــه مــواردي ماننــد امــکان عــدم دسرتســی کافــی محققــان بــه اطلعــات بیــار در صــورت رعایــت کامــل محرمانگــی و ســوگیری انتخابــی در جمــع آوری داده هــا بــرای رجیســرتی هــای بیــار اشــاره داشــت. راه حــل هــاي پيشــنهادي طبــق مطالعــات بدســت آمــده شــامل پیــروی از دســتورالعمل هــای مناســب در اجــرای رجیســرتی هــا و تعریــف واضــح و شــفاف اهــداف اســتفاده از داده هــای جمــع آوری شــده توســط رجیســرتی هــا و گســ شرت حــوزه ی محرمانگــی از داده هــای شناســایی بــه متامــی داده هــای موجــود در رجیســرتی هــا بــود. نتیجــه گیــری: بــا توجــه بــه اهمیــت رعایــت اصــول اخلقــی در اســتفاده از اطلعــات مراقبــت ســامت از جملــه رجیســرتی هــای نظــام ســامت و وجــود شــواهدی از فقــدان وجــود سیاســتهای کافــی در ایــن زمینــه پیشــنهاد مــی شــود در سیســتم هــای نوپــای رجیســ یرت در کشــور ایــران قبــل از اجرایــی منــودن رجیســ یرت از وجــود سیاســتهای مناســب و اعــال راهکارهــای رضوری در ایــن زمینــه اطمینــان حاصــل شــود میتــوان از تجــارب رجیســرتی هــای موجــود در ایــن زمینــه بهــره گرفــت. کلیــد واژه هــا: اخــاق، رجیســرتی، اطلعــات واژههاي كليدي : اخ قل رجیسرتی اطلعات

109 11-13 December 2 0 1 8

Legal aspects and ethical considerations in the disease registry

Leila Shahmoradi1, Roya Naemi2 1- Tehran University of Medical Sciences, [email protected] 2- Tehran University of Medical Sciences, [email protected] Abstract مقدمــه: در حــال حــارض سیســتمهای رجیســرتی بــا جمــعآوری دادههــای دقیــق و بــا کیفیــت، دولتهــا را قــادر بــه نظــارت، ردیابــی و پیشــگیری از بــروز بیم ریهــای خطرنــاک میســازد.اما، بــا نظــارت و ســازماندهی ســامت عمومــی توســط دولــت، نگرانــی در رابطــه بــا افشــای اطلعــات ســامت شــخصی افزایــش یافتــه اســت. مطالعــه حــارض بــا هــدف بررســی جوانــب قانونــی و ملحظــات اخلقــی در رجیســرتی بیــاری ارائــه شــده اســت کــه شــامل: الــف- اصــول اخلقــی در انجــام تحقیقــات علمــی ب- عنــارص اساســی حفاظــت ازمحرمانگــی در رجیســرت ی بیــاری ج- ارزیابــی تاثیــرات حریــم خصوصــی د- اقدامــات الزم حفــظ محرمانگــی داده و اطلعــات ح- مالکیــت داده خ- اســتخدام رشکتکننــدگان در مطالعــه و رضایــت آگاهانــه اســت. روش کار: مطالعــه حــارض یــک مطالعــه مــروری بــود، جمــع آوری از طریــق جســتجو در پایــگاه اطلعاتــی نظیــرScopus ،Pubmed،Web of Science و google scholar انجــام شــد. ســپس مقــاالت از نظــر محتوایــی مــورد بررســی قــرار گرفتــه و پــس از اســتخراج مطالــب، دســتهبندی و یکپارچــه کــردن آنهــا، در راســتای هــدف مطالعــه از اطلعــات موجــود اســتفاده گردیــد. يافتههــا: عنــارص اساســی حفاظــت ازمحرمانگــی در رجیســرت ی بیــاری شــامل پاســخگویی، شناســایی اهــداف، رضایــت ، محــدود کــردن مجموعــه، محــدود کــردن اســتفاده، افشــا و نگهــداری، صحــت، حفاظــت، شــفافیت، دسرتســی فــردی و مقابلــه بــا چالشهــا وشــکایات میباشــد. یکــی از اقدامــات الزم جهــت حفــظ محرمانگــی اطلعــات تعییــن فــردی بــه عنــوان مســئول حفــظ محرمانگی اطلعــات اســت و کارکنــان رجیســرتی و اشــخاص ثالــث بایســتی از مســئولیتهای فــردی خــود در قبــال محرمانــه بــودن آگاه باشــند. نتیجهگیــری: اطلعــات بســیار شــخصی و حســاس افــراد در رجیســرتی ذخیــره میشــود. از ایــن رو، محرمانــه بــودن اطلعــات بایــد تضمیــن شــود. تدویــن سیاســت روشــن و دقیــق جهــت حافظــت از اطلعــات و دسرتســی بــه دادههــا وظیفــه حیاتــی ذینفعــان رجیســرتی اســت. اطمینــان مــردم از محرمانگــی اطلعــات ارتبــاط مســتقیمی بــا ارائــه اطلعــات شــخصی افــراد بــه رجیســرتی دارد؛ ترویــج و محافظــت ازســامتی مــردم بــه اطلعاتــی کــه از آنهــا دریافــت میکننــد بســتگی دارد.در نتیجــه متخصصــان بهداشــت عمومــی بایــد بهرتیــن رویکردهــای اخلقــی را بــرای پیرشفــت در زمینــه هــای اجتمعــی، عدالــت و ســامت عمومــی بــه کار گیرند. کلید واژهها: جوانب قانونی- ملحظات اخلقی- رجیسرتی بیمری Registry of Hereditary Breast Cancer: Study Protocol and Preliminary Results

ELMIRA EBRAHIMI1, REZA SHIRKOOHI1, ROZA BAHARI1, KAZEM ZENDEHDEL1* 1- Cancer Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran Corresponding author: Dr. Kazem Zendehdel* Address: *Cancer Research Center, Cancer Institute of Iran, Tehran University of Medical Sciences, Tehran, Iran. P.O. BOX: 1419733133. Email: [email protected] Abstract Introduction: Follow-up of Iran Breast Cancer Study (IRBCS), conducted between 2012 and 2016, we established Iran Familial Breast Cancer Registry (IR-FBCR) to foster research on hereditary breast cancer and improve preventive and treatment strategies for this disease. This report represents the IR-FBCR studied protocols and the preliminary results. Methods: Between 2012 and 2016, a total of 410 breast cancer patients who met at least one of the National Comprehensive Cancer Network (NCCN) hereditary breast cancer risks criteria for genetic testing were recruited. Further by the establishment of the IFFBCR, patients with the above criteria attending a genetic counseling session at Cancer Institute of Imam Khomeini Hospital, Tehran, Iran, were eligible to participate in this registry. Detailed information including socio-demographic, environmental, clinical history, and family history data, as well as bio-specimen, is obtained from each participant. Web-based software has also been developed to facilitate data collation, management, and distribution. Results: Based on data analysis of 332 patients, only 3 (0.9%) were male and 114 (34.3%) patients had only young age at onset (i.e. less than 40 years). Additionally, there were 118 (35.5%) patients met a single criterion of which the majority had a family history of breast cancer. Patients meeting >1 criterion constitute about one-third of our population (30.1%). Conclusion: IR-FBCR will be a good resource to investigate factors of efficient causes contributing to the incidence of hereditary breast cancer. The next step is to collaborate with the other centers in Iran and to scale it up to a national level. Keywords: IR-FBCR, hereditary breast cancer

110 Evaluation the incidence of cancers in Hormozgan Province in 2014

Mehraban Shahi1, Nasrin Davaridolatabadi2, Maedeh Hashemipoor3, Narges Zakeri Ziarati4, Mehri Ansari5, Ghazaleh Kaveh6, Fatemeh Zolfizadeh7 1- Assistant Professor, Faculty of Para-Medicine, cancer registry, Hormozgan University of Medical Sciences, Bandar Abbas, Iran. 2- Assistant Professor of Health Information Technology, Faculty of Paramedicine, Hormozgan University of Medical Sciences, Bandar Abbas, Iran. 3- BS Medical record, Khatamanbiya Hospital, Hormozgan University of Medical Sciences, Jask, Iran. 4- BS Health informatin technology, cancer registry, Hormozgan University of Medical Sciences, Bandar Abbas, Iran. 5- MS Health informatin technology, Pediatrics Hospital, Hormozgan University of Medical Sciences, Bandar Abbas, Iran. 6- BS Health informatin technology, Hormozgan University of Medical Sciences, Bandar Abbas, Iran. 7- MSc in Health Care Management, cancer registry, Hormozgan University of Medical Sciences, Bandar Abbas, Iran. Abstract Introduction: Noncommunicable (non-contagious) diseases, especially cancer, are one of the most important health problems in developing countries, with an increasing incidence and prevalence. The first and most important action to control cancers, is having access to the accurate statistics and the information of cancer patients and determining their geographical distribution in the community. The aim of this study was to determine the incidence of cancers in Hormozgan Province in 2014. Materials and Methods: In this descriptive cross-sectional study, we used the data of cancer patients diagnosed in 2014 in pathology centers, hospitals and the system for registering deaths. These data were manually collected by the cancer recording form or Excel files. After solving the defects of the cases, and coding them based on ICD-O-3, we recorded these cases into the cancer screening system. By collecting information from different sources, replication was done in the system and confirmed cases were finalized recorded. the Excel file for tumors which was from the site output, was analyzed. Results: Out of 1189 new cases of cancer in 2014 in Hormozgan province, 51.13% were females and 48.86% males. The unrefined incidence rate and age standardized of total cancers in the province s population was 94.70 and 62.99 per 100,000 people. The most common cancer in women and in the general population was breast cancer with the 21.29 unrefined incidence rate, the most prevalent was in the age group of 60-65 years. The lung cancer with 5.67 unrefined incidence rate in males was ranked one and in the whole population was ranked second. Leukemia with 4.65 unrefined incidence was the fourth most common cancer in men and the second most common cancer in women. Colorectal cancer was also the fifth common cancer in men and the third common cancer in women. Conclusion: Due to the high incidence of breast cancer in the province, more education programs are needed through mass media, health centers and hospitals. Planning for the implementation of a cancer prevention plan is necessary, and it can be provided by requiring screening tests and periodic examinations and establishing a cooperation agreement between the Ministry of Health and other organizations. Keyword: incidence of cancer, cancer registration. Keywords : incidence , cancer , cancer registration

111 11-13 December 2 0 1 8

Comparison of thrombolytic facilitated percutaneous coronary intervention with primary percutaneous coronary intervention in acute STEMI patients (Findings from ACS Registry)

Masoumeh Sadeghi1, Azam Soleimani2, Maryam Soleimani3 1- Professor, Cardiac Rehabilitation Research Center, Cardiovascular Research Institute, Isfahan University Of Medical Sciences, Isfahan, Iran. 2- Assistant Prof, Heart Failure Research Center, Cardiovascular Research Institute, Isfahan University Of Medical Sciences, Isfahan, Iran. 3- Medical Doctor, Isfahan Cardiovascular Research Center, Cardiovascular Research Institute, Isfahan University Of Medical Sciences, Isfahan, Iran. Abstract Background: There is still a controversy in the preferred method of reperfusion in acute ST segment elevation myocardial infarction (STEMI), when the achievement of well-defined Golden Times is difficult. We sought to evaluate the procedural and in hospital outcomes of the strategy of thrombolytic administration and rescue or routine percutaneous coronary intervention (PCI) versus primary PCI (PPCI) strategy in acute STEMI. Methods: This observational prospective study derived from STEMI registry that was a part of Persian Registry Of cardio Vascular disease(PROVE) . The data of 237 acute STEMI patients presented or referred to Chamran Cardiovascular Research Center (CCRC) were collected. Base line characteristics, TIMI (Thrombolysis In Myocardial Infarction) flow grade of infarct related artery (IRA), left ventricular ejection fraction (LVEF) and in hospital course were evaluated. Results: The mean age of patients was 61.4±13.0 years, 86.9 % were male, 13.1 % were diabetic and 67.9 % had Anterior STEMI. Patients in the lytic group were younger; more smokers, more often male with higher body weight and lower systolic blood pressure (SBP). The pre PCI TIMI flow grade 3 was more often seen in the lytic then PCI group (39.4% vs 21%; p < 0.001) and less thrombectomy performed in this group of patients (12.9% vs 26.7%; p= 0.011). Time to reperfusion was significantly longer in PPCI group (182.4±233.7 min vs 44.6±93.4 min respectively, p <0.001). No difference in mortality, mean of LVEF and incidence of atrial fibrillation (AF) was observed in two groups. Conclusion: If the PPCI strategy could not be performed in the golden time, the strategy of thrombolytic administration and rescue or routine PCI leads to more initial IRA patency, less thrombectomy with similar clinical outcome. Keywords : ST Segment Elevation Myocardial Infarction, Percutaneous Coronary Intervention, Thrombolytic Therapy, Treatment Outcome, Reperfusion Application of Ischemic Heart Disease Registration in identifying important risk factors in the age range of 20 to 40 years samane sistani1, somaye norouzi2 1- Mashhad university of science Email: [email protected] 2- Mashhad university of science Email: [email protected] Abstract مقدمــه: ثبــت بیــاری هــا بــرای جمــع آوری ، ذخیــره ســازی ، بازیابــی ، تجزیــه و تحلیــل و انتشــار اطلعــات مربــوط بــه یــک بیــاری مــی باشــد. بیــاری قلبــی و عروقــی یکــی از شــایع تریــن بیــاری هــا در جوامــع صنعتــی اســت. کــه ایــن بیــاری بیــش از هــر بیــاری دیگــری موجــب ناتوانــی و رضر اقتصــادی مــی گــردد و یکــی از موضوعــات هزینــه بــر در حیطــه بهداشــت ودرمــان کشــور اســت. هــدف از مطالعــه در حــال حــارض کاربــرد ثبــت بیــاری ایســکمیک قلبــی در شناســایی ریســک فاکتورهــای مهــم بیــاری قلبــی در بیــاران بــازه ســنی 20 تــا 40 ســال مــی باشــد. روش بررســی: ایــن پژوهــش کاربــردی از نــوع گذشــته نگــر توصیفــی بــه روش مقطعــی در ســه بیمرســتان امــام رضــا)ع( ، قائم)عــج( و هاشــمی نــژاد مشــهد در ســال هــای 1389 الــی 1391 انجــام شــد. بیمرانــی کــه بــا تشــخیص ایســکمیک قلبــی در بــازه ســنی 20-40 ســال بســرتی شــده بودنــد مــورد بررســی قــرار گرفتنــد و بــرای هــر بیــار داده

112 هــای هویتــی و ریســک فاکتــور هــای مهــم بیــاری ایســکمیک قلبــی از سیســتم اطلعــات بیمرســتانی )HIS( و پرونــده هــای کاغــذی جمــع آوری و ثبــت گردیــد. داده هــای ثبــت شــده پــس از پــاک ســازی و آمــاده ســازی ، جهــت تجزیــه تحلیــل آمــاری و داده کاوی مــورد اســتفاده قــرار گرفــت. تجزیــه تحلیــل آمــاری توســط آزمــون هــای بانومینــال تســت و کای اســکور بــا اســتفاده از نــرم افــزار آمــاری SPSSنســخه 16 و داده کاوی بــا نــرم افــزار weka و الگوریتــم k-means انجــام گردیــد. یافتــه هــا: نتایــج شــش خوشــه بنــدی داده هــا بــا اســتفاده الگوریتــم K-means بــه اینگونــه بــود کــه بیشــرتین افــرادی کــه در یــک خوشــه قــرار میگرفتنــد شــامل مــردان متاهــل بــا میانگیــن ســني 37ســال بــود و هــر يــک از ريســک فاکتورهــای بیــاری قلبــي در آنهــا بــه ايــن ترتیــب ديابــت بــا 0.7درصــد، فشــارخون بــا 11درصــد، مــرف ســیگار 0.7 درصــد، چــريب خــون بــا 10 درصــد و ســابقه خانوادگــي بــا 31 درصــد گــزارش شــده اســت کــه بیشــرتین ريســک فاکتــور ســابقه خانوادگــي گــزارش شــده اســت. نتیجــه گیــری: یافتــه هــا نشــان مــی دهــد ســابقه خانوادگــی نســبت بــه دیگــر ریســک فاکتــور هــای ســنجیده شــده بیشــرت مــی باشــد. ثبــت بیــاری ایســکمیک قلبــی مــی توانــد بــه شناســایی ریســک فاکتورهامــی مهــم قلبــی کمــک کنــد. ایــن موضــوع و شــیوع روز افــزون بیــاری ایســکمیک قلبــی در ســنین جوانــی نیازمنــد انجــام مطالعــات بیشــرتی در ایــن زمینــه جهــت انجــام اقدامــات پیشــگیرانه از عــوارض خطرنــاک بیــاری قلبــی عروقــی مــی باشــد. واژههاي كليدي : بیمری ایسکمیک قلبی ، ریسک فاکتور، ثبت بیمری ، داده کاوی Cancer Incidence in Kerman Province, Southeast of Iran: Report of an ongoing Population-Based Cancer Registry, 2015

Armita Shahesmaeili1, Reza Malekpour Afshar2, Azadeh Sadeghi3, Azam Bazraf- shan4, Seyed Vahid Ahmadi Tabatabaie5, Mehdi Shafiee6 1- Assisstant professor of epidemiology, Kerman University of Medical Sciences, Iran 2- Professor of Pathology, Kerman University of Medical Sciences, Iran 3- MSc. of Health Education, Kerman University of Medical Sciences, Iran 4- PhD. candidate of Medical Library and Information Sciences, Kerman University of Medical Sciences, Iran 5- Assisstant professor of health education, School of Public Health, Kerman University of Medical Sciences, Iran 6- MD, MPH, Vice Chancellor for Public Health, Kerman University of Medical Sciences, Iran Abstract Introduction: The epidemiology of common cancers in Kerman province, southeast of Iran, was assessed based upon results of the Kerman Population-Based Cancer Registry Program (KPBCR). Methods: in this retrospective study, all patients diagnosed with primary cancers and registered with the KPBCR were included. New cancer cases registered from 2014 were identified from pathological labs, medical reports of 48 health facilities providing cancer diagnosis or treatment services and the national death registry program. Data for patients who were referred to neighboring provinces to access health services were also collected from national referral registries. Results from autopsies was additionally extracted from regional forensic and legal medicine centers and added to the registry periodically. Age standardized incidence rates (ASRs) per 100,000 person-years for all cancers were computed, using direct-standardization and CanReg methodology. Mortality to incidence (M:I) ratios and microscopically verified (MV) proportions were calculated as quality measures. Results: A total of 4009 cases of cancer were registered in Kerman province, 2015. Of these 46% involved women (n=1864). Individuals aged 60-64 years represented the largest proportion (12.2%) of the total cancer prevalence, followed by those aged 55-59 years (11.39%) and 65-69 years (9.20%). The ASRs for all cancers were 171.8 and 132.3 per 100,000, in men and women, respectively. In women, breast (ASR: 19.7), skin (ASR: 12.1), female genital organs (ASR=11.5) and colorectal (ASR: 11.4) were the most common cancers. In men, bladder (ASR: 21.2), skin (ASR: 20.4), lung (ASR: 15.8), colorectal (ASR: 12.4), and larynx (ASR: 12.1) were found to be the most frequent. Conclusion: This study provided latest evidence on epidemiology of cancer in the southeast of Iran that could be used to empower prevention and control interventions in a developing country. Keywords : cancer, incidence, Kerman 113 11-13 December 2 0 1 8

Study of clinical characteristics of patients with celiac disease in Hamedan province in 2017 - 2019 leyla halimi1, behrooz afshar2, said bashirian3, bizhan shahbazkhani4, manuchehr karami5 1- MSc of Epidemiology, Hamadan University of Medical Sciences, Shahid Beheshti Medical Center, Lhhalimi20@yahoo. com 2- Department of Gastroenterology and Liver, Hamadan University of Medical Sciences, Shahid Beheshti Medical Center, [email protected] 3- Associate Professor of Health Education and Promotion, Hamedan University of Medical Sciences, Assistant Professor of Research and Technology, [email protected] 4- Department of Gastroenterology and Liver, Tehran University of Medical Sciences, Shariati Medical Center, shahbaz@ ams.ac.ir 5- Associate Professor of Epidemiology, Non-Hodgkin s Disease Modeling Research Center, Hamadan University of Medical Sciences, Hamadan, Iran [email protected]

Abstract مقدمــه: ســلیاک یــک بیــاری مزمــن گوارشــی وراثتــی می¬باشــد کــه بــه علــت آســیب پرزهــای روده کوچــک ســبب اختــال در جــذب مــواد غذایــی و عــدم تحمــل پروتئینــی بــه نــام گلوتــن می¬شــود، اگرچــه ایــن بیــاری شــیوع کمــی در حــد 1 درصــد جامعــه دارد ولــی در رسارس جهــان شــایع تریــن بیــاری عــدم تحمــل بــه غذاســت]1[. تظاهــرات بالینــی از فــرم پنهــان کــه طــی غربالگری¬هــای روتیــن اختــاالت اتوایمیــون شناســایی می¬شــود تــا علیــم متفــاوت گوارشــی و غیرگوارشــی ماننــد اســهال، آمنــی متغیــر اســت]2[. مطالعــه حــارض بــه منظــور بررســی اپیدمیولــوژی بیــاری در اســتان همــدان بــا در نظــر گرفــن ویژگی¬هــای بالینــی ســلیاک طراحــی شــد . روش¬هــا: داده هــای مطالعــه حــارض برگرفتــه از نظــام کشــوری ثبــت بیــاری ســلیاک مصــوب پژوهشــکده بیمری¬هــای گــوارش و کبــد دانشــگاه علــوم پزشــکی تهــران، اســت.تعداد 72 نفــر از بیــاران شناســایی شــده مبتــا بــه ســلیاک در اســتان همــدان از ســامانه ثبــت بیــاری ســلیاک کشــوری اســتخراج شــده اســت. داده¬هــای مطالعــه بــا نــرم افــزار SPSS نســخه 21 مــورد تجزیــه و تحلیــل قــرار گرفــت. یافته¬هــا: بیــاران شناســایی شــده بــا میانگین)انحــراف معیــار( برابــر 47/32 )2/17( ســال بــا میانگیــن BMI 23 کــه 7/34% آنهــا مــرد و 3/65% زن بودنــد. عمــده تریــن شــکایات بیــاران در زمــان تشــخیص بــه ترتیــب شــامل نفــخ شــکم، درد شــکم، بی¬اشــتهایی و اســهال بــود کــه فراوانــی بــه ترتیــب 6/80%، 1/68%، 1/68%، 1/61% بــود. میانگیــن ســن تشــخیص بیــاران 29/25 ســال و میانگیــن فاصلــه بــروز اولیــن علمــت تــا تشــخیص قطعــی ســلیاک 27 مــاه بــه دســت آمــد. همچنیــن بیــاران از نظــر وضعیــت تاهــل، 1/45% مجــرد و 50% متاهــل و 2/4% همــر فــوت شــده یــا مطلقــه بودنــد. از نظــر تحصیــات بیشــرتین بــروز در افــراد دیپلمــه 25% و لیســانس 3/22% و ابتدایــی 1/18% و راهنمیــی 3/15% بودنــد و از نظــر قومیت¬هــای مختلــف غــرب کشــور عمدتــا آذری 1/39%، فــارس 5/37%، لــری 5/12% و کــردی 4/9% بودنــد. نتیجه¬گیــری: بــر اســاس ایــن مطالعــه، بیــاری ســلیاک در زنــان شــایع¬تر از مــردان بــود. علیرغــم اینکــه علئــم بــارز بیــاران بســیار متفــاوت و متنــوع اســت، عمــده تریــن شــکایات شــایع بیــاران بــه ترتیــب شــامل نفــخ شــکم، شــکم درد، بی¬اشــتهایی و اســهال بــود. از آنجــا کــه فاصلــه بــروز علئــم تــا تشــخیص قطعــی بیــاری زیــاد بــود و اکــر بیــاران در جوانــی تشــخیص داده شــده بودنــد، بــه نظــر می¬رســد الزم باشــد بــه علئــم بیــاری در ســنین نوجوانــی و کودکــی نیــز توجه شــود. واژههاي كليدي : اتوایمیون، سلیاک، ثبت بیمری، گلوتن، همدان

114 Data mining in the registry, opportunities and challenges zahra sadat ershadnia1, somaye fazaeli2 1- Master of Medical Information Technology Management, Deputy of Food and Drug, Professor of Medical Education and Health Information Technology, Faculty of Paramedicine Sciences, Mashhad University of Medical Sciences, Iran [email protected] 2- Assistant Professor, Health Information Management, Department of Medical Records and Health Information Technology, Faculty of Paramedicine Sciences, Mashhad University of Medical Sciences, Iran [email protected] Abstract مقدمــه: در عــر اطلعــات، داده هــا عمــده تریــن دارایــی هــر ســازمان بــه شــار مــی رونــد. ســازمان هــای مراقبــت ســامت نيــز مخــزن عظيمــي از داده هــاي مربــوط بــه تشــخيص و درمــان بيــاري هــا هســتند کــه بســياري از آن هــا در قالــب رجيســرتي هــا گــردآوري مــي شــوند، لــذا موفقيــت ايــن ســازمان هــا در گــروی مدیریــت مناســب ايــن داده هاســت. لــذا در ایــن پژوهــش بــه بررســی فرصــت هــا و چالــش هــای اســتفاده از روش هــاي داده کاوي در رجيســرتي هــاي تخصــي در حــوزه مراقبــت ســامت پرداختــه شــده اســت. روش: ایــن مقالــه از نــوع مــروری اســت کــه بــا مطالعــه متــون مرتبــط و بــه روش بررســی منابــع معتــرب کتابخانــه ای و پايــگاه هــاي معتــرب اینرتنتــی بــدون محدوديــت زمــاين انجــام گرفتــه اســت. کليــد واژه هــای مــورد جســتجو شــامل داده کاوی، رجيســرتي، فرصــت، چالــش و کاربــرد در حــوزه ســامت و محــدود بــه زبــان فارســی و انگليســی بــوده اســت. یافتــه هــا: داده کاوي بــه معنــاي کشــف دانــش و اســتخراج الگوهــاي نهفتــه از بــن حجــم انبوهــي از داده هاســت. اســتفاده از ابزارهــای پایــگاه داده تحليلــی و داده کاوی بــه كنــدي امــا بــه طــور فزاينــده بــراي رفــع مشــكلت متعــدد در كشــف دانــش در بخــش ســامت بــه كارگرفتــه شــده اســت. تــوان پــردازش حجــم زیــاد داده هــای ســازمان بــدون تکيــه بــر پيــش فــرض هــای قبلــی، هزینــه پایــن و مدیریــت نســبتا آســان، از فرصــت هــای بکارگــری ایــن ابــزار هاســت. اســتفاده از رجيســرتي هــا بــراي ثبــت بيمريهــاي مختلــف مــي توانــد توامننــدي اســتفاده از داده کاوي را افزايــش دهــد. متدهــاي مختلفــي در زمينــه داده کاوي وجــود دارد کــه از عمــده تريــن رويکردهــاي مــورد اســتفاده در حــوزه ســامت محســوب مــي شــود کــه بــه تشــخیص مــوارد غــر نرمــال، خوشــه بنــدی اطلعــات، طبقــه بنــدی داده هــا ماننــد آناليــز آمــاري چنــد متغــره و پيــش بينــي نتايــج اقدامــات درمــاين، درخــت تصميــم گــري و... اشــاره منــود. ایجــاد انــواع تحليــل هــا در مــورد پایــگاه داده مربــوط بــه بيــاران، تعيــن نــوع درمــان، شناســایی عــوارض جانبــی داروهــا، کنــرتل عفونتهــای بيمرســتانی و ....از کاربردهــای عمــده ایــن ابــزار در حــوزه رجيســرتي هــاي نظــام ســامت اســت. مــی تــوان گفــت چالــش هایــی همچــون خــط مشــی هــای مبهــم مربــوط بــه حفــظ حریــم شــخصی و محرمانگــی داده هــای ســامت و مقاومــت کاربــران رونــد گســرتش آن را کنــد ســاخته اســت. همچنــن دقــت روش هــای داده کاوی بــه ویژگــی هــای مجموعــه داده هــا و حجــم داده هــا بســتگی دارد کــه در مــورد مجموعــه داده های مراقبــت هــای بهداشــتی بســیار نامتــوازن هســتند و طبقــه بنــدي بــه صــورت متعــادل دشــوار اســت. لــذا ممکــن اســت پیــش بینــی هــای اشــتباه در زمــان طبقــه بنــدي داده هــا رخ دهــد، کــه بــا توجــه بــه حساســيت علــم پزشــي و گــره خــوردن آن بــا جــان انســان هــا بــه راحتــي قابــل پذيــرش منــي باشــد. مشــکل ديگــر داده هــاي مراقبــت ســامت تعــدد داده هــاي از دســت رفتــه اســت کــه باعــث ايجــاد خطــا در محاســبات مــي گــردد. بــه نظــر مــی رســد تقريبــا هیــچ روش مناســب داده کاوی بــرای حــل همــه ایــن مســائل وجــود نــدارد. نتیجــه گیــری: بــا توجــه بــه نقــش مهــم داده کاوی و رجيســرتي هــا در حــوزه ســامت، بــه خصــوص در پیــش بینــی انــواع بیــاری هــا و نتايــج درمــان، در ايــن زمينــه نيازمنــد طراحــي روش داده کاوی کامــي اســت کــه بتوانــد بــر متــام مســائل مرتبــط بــا داده هــاي مراقبــت ســامت فائــق آيــد و باالتريــن دقــت را در طبقــه بنــدي صحيــح داده هــا داشــته باشــد بــراي رســيدن بــه ايــن هــدف اســتفاده از مــدل هــاي ترکيبــي مــي توانــد مفيــد واقــع شــود. همچنــن نيــاز بــه ایجــاد زیــر ســاختهای مناســب فنــی و قانونــی در ايــن زمينــه مــی باشــد. از طــرف ديگــر لــزوم تجهيــز ســازمان هــاي مراقبــت ســامت بــه رجيســرتي هــاي جامــع از الزامــات بهــره گــري هــر چــه بيشــرت از ايــن فناوريهــا اســت. واژههاي كليدي : رجيسرتي، داده کاوی، سلمت، فرصت، چالش

115 11-13 December 2 0 1 8

Economic Evaluation of Disease Registries: A Systematic Review

hamidreza shamlou1, maryam jafarjalali2, zohreh shoyukhi3, maryam morshedian4, Hossein Amery5, Vajihe Ramezani6, hamidreza dehghan7 1- Student Masters in Health Technology Assessment, Shahid Sadoughi University of Medical Sciences, Yazd, Iran [email protected] 2- Student Masters in Health Technology Assessment, Shahid Sadoughi University of Medical Sciences, Yazd, Iran [email protected] 3- Student Masters in Health Technology Assessment, Shahid Sadoughi University of Medical Sciences, Yazd, Iran [email protected] 4- Student Masters in Health Technology Assessment, Shahid Sadoughi University of Medical Sciences, Yazd, Iran [email protected] 5- Shahid Sadoughi University of Medical Sciences, Yazd, Iran [email protected] 6- Shahid Sadoughi University of Medical Sciences, Yazd, Iran [email protected] 7- Shahid Sadoughi University of Medical Sciences, Yazd, Iran [email protected] Abstract INTRODUCTION: AIM: The purpose of this study is to assess the economic performance of registries in order to determine whether this process is cost-effective. METHOD: We conducted an overview of the Economic Evaluation Articles on registries. We have included all published articles until November 10, 2018, in the PubMed database. The search and extraction of articles was done by a team of four members. The extracted articles were divided into four sections and were independently studied by each individual. Then, each episode was examined by the second person and the differences between the two were resolved, and where the difference was not resolved, the third person was helped to solve the problem. RESULT: The keywords in MeSH included economic and registry, which resulted in the combination of these two keywords of 583 articles. According to the exclusion criteria, the economic evaluation of the registries, 9 articles were found that only part of them was related to the subject of the study. No study was done directly on this subject. These studies have shown that registries can reduce costs. Conclusion: Registries are a good source for Economic Evaluation studies but they are never been subject of these studies. Keywords : cost-effectiveness cost-benefit registry economic evaluation

Viral hepatitis registry in Fars province, Iran

Mohammad Reza Fattahi1, Ahad Eshraghian2, Vida Ahmadi3, Alireza Safarpour4 1- Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran 2- Gastroenterologist and hepatologist 3- Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran 4- Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran Abstract Background: Hepatitis is an inflammation of the liver. The condition can be self-limiting or can progress to fibrosis (scarring), cirrhosis or liver cancer. Hepatitis viruses are the most common cause of hepatitis in the world. Most cases of hepatocellular carcinoma (HCC) are associated with cirrhosis related to chronic hepatitis B virus (HBV) or hepatitis C virus (HCV) infection. Registration and follow up of hepatitis patients can detect patients at early stages of cirrhosis and carcinoma during the natural course of the disease. This is the first registry of Hepatitis in Iran established and centralized in Shiraz affiliated to gastroenterohepatology research center, Shiraz University of Medical Sciences, Shiraz Iran. Methods: All patients with hepatitis (B, C or D) who referred to our outpatient clinics or admitted due to various complications of hepatitis has been included. Data of patients including age, sex, and other demographic information, medications, complications during follow up, and laboratory investigations were recorded in an electronic file in software designed for this registry. Of

116 the 5057 registered patients, 2493 have hepatitis B, and 2564 have hepatitis C virus infection. Mean age of HBV and HCV patients were 35.6 ± 11.1 and 38.4 ± 11.8 years, respectively. 2133 patients were HBe Ag negative and 360 patients were HBe Ag positive. 506 patients received treatment for HBV infection. 329 patients were treated with Tenofovir, 190 patients with Lamivudine, and 188 patients received Adefovir. In patients with HCV infection, there were 2255 men and 309 women. Among those who were checked for HCV genotypes, 870 patients had genotype I, 692 patients had genotype III, 11 patients had genotype II and 12 patients had genotype IV. 210 patients had undetermined genotype and 69 patients were non-typable. 189 patients were treated with Sofosbuvir+Daclatasvir, 110 patienst with Sovodac, 229 patients with Sofosbuvir+Ledispavir. 458 patients were treated previously with Pegaferon. Conclusion: This report is the preliminary results of hepatitis registry and epidemiologic information of hepatitis patients in Iran. Keywords : Viral Hepatitis , HCV, HBV

Design and implementation of registration of hormonal, metabolic and clinical signs of poly cystic ovary syndrome and the introduction of BioBank

FATEMEH NASIRI AMIRI1, Sedigheh Esmaeelzadeh2, Mania Amiri3 1- Assistant Professor of Midwifery and Reproductive Health, Babol University of Medical Sciences,[email protected] 2- Professor of Obstetrics and Gynecology, Babol University of Medical Sciences, [email protected] 3- Gynecologist and non-faculty researcher of Babol University of Medical Sciences, [email protected]

Abstract Polycystic ovarian syndrome (PCOS) is one of the most common endocrine disorders in women with a 4 to 20 percent incidence, which in our country was based on the criteria of Rotterdam (14.6%). Because of the high prevalence and complications of this syndrome, a lot of financial burden comes into the health system of the country. Various studies have shown that there is a significant difference in the clinical symptoms of PCOS. Even among Asian populations, clinical symptoms of PCOS have also varied. Asian countries are at high risk for metabolic syndrome and type 2 diabetes. In some studies, PCOS women with increased testosterone had an atherogenic lipid profile that reduced HDL and increased LDL, but in another study, hyper androgenism was not associated with dyslipidemia in PCOS women. In recent years, along with increased obesity and lifestyle changes, the rate of this syndrome is increasing. Some data suggest that these women are at risk of developing some cardiovascular, metabolic, cancers and various mental disorders, such as depression, anxiety, social problems, sexual dysfunction and a negative perception of their body image and unhealthy lifestyle. . In our country, there is no comprehensive study on this syndrome such as PCOS-related symptoms, menstrual cycle pattern, prevalence of PCO morphology in ultrasound, lifestyle and the prevalence of some metabolic, immunological and hormonal disorders. The aim of this study was to register and establish a database of hormonal, metabolic, immunological and clinical profiles of women with PCOS and the introduction of bio-bank in women referred to Fatemeh al-Zahra Babol s educational and therapeutic center in order to determine the health status of these women in different dimensions. Keywords: Poly cystic ovarian syndrome, clinical signs, hormonal, metabolic, immunological

117 11-13 December 2 0 1 8

liver cirrhosis registry in Iran

Mohammad Reza Fattahi1, Mehdi Saberifiroozi2, Ahad Eshraghian3, Vida Ahmadi4, Alireza Safarpour5, Hossein Poustchi6, Reza Malekzadeh7 1- Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran. 2- Digestive Disease Research Institute, Tehran University of Medical Sciences, Tehran, Iran. 3- Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran. 4- Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran. 5- Gastroenterohepatology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran. 6- Digestive Disease Research Institute, Tehran University of Medical Sciences, Tehran, Iran. 7- Digestive Disease Research Institute, Tehran University of Medical Sciences, Tehran, Iran. Abstract Introduction: Liver cirrhosis is characterized by chronic hepatic parenchymal damage, hepatocyte loss, fibrosis formation causing progressive hepatic dysfunction and hepatic failure. Liver cirrhosis causes significant morbidity and mortality and accounts for 2 % of all annual death worldwide. The epidemiology of liver cirrhosis is variable in different geographical areas of the world. Aims and Methods: This study is the first registered data on epidemiology of liver cirrhosis in Iran focusing on underlying liver diseases and complications. This registry has been established at Gasteroeterohepatology Research Center, Shiraz, Iran. The registry has been started from March 2015. All patients with confirmed liver cirrhosis by biopsy and/or transient elastography plus clinical clues were included. Patients with liver cirrhosis that had been admitted in hospitals due to various complications of cirrhosis were also included. Data of patients were recorded in a web- based software designed and produced based on data gathering forms and questionnaires of the registry. Demographic data, laboratory data, anthropometric indices, drug history, social history including alcohol consumption, cigarette and water pipe smoking, opium consumption, co- morbid diseases were recorded. Complications of liver cirrhosis including hepatocellular carcinoma (HCC), esophageal or gastric varices, spontaneous bacterial peritonitis (SBP), ascites, hepatorenal syndrome, portal vein thrombosis (PVT) and hepatic encephalopathy were recorded. Results: 3287 patients were included up to 30th March 2018. 2144 patients (65.2 %) were male and 1143 patients (34.8 %) were female. Mean age of patients were 46.50 ± 21.28 years. Main underlying causes of liver cirrhosis in our study population were outlined in Table. Hepatitis B virus (HBV) induced liver cirrhosis was the most common cause of liver cirrhosis that was diagnosed in 664 patients (20.20 %). The second and third most common etiologies of liver cirrhosis were cryptogenic liver cirrhosis and hepatitis C virus (HCV) induced liver cirrhosis that were diagnosed in 619 patients (18.83 %) and 443 patients (13.47 %) respectively. The highest prevalence in patients with cryptogenic cirrhosis, HBV and HCV induced cirrhosis and autoimmune hepatitis (AIH) was observed between 50-60 years. The highest prevalence of non-alcoholic steatohepatitis (NASH) was seen between 60-70 years. Ascites was detected in 1639 patients (50%) and esophageal varices in 1118 patients (36%). 969 patients had at least one episode of hepatic encephalopathy and 382 patients had at least one episode of SBP. Variceal bleeding was occurred in 636 patients and hepatorenal syndrome (HRS) in 254 patients. PVT was diagnosed in 360 patients and HCC in 293 patients. Ascites, esophageal varices and hepatic encephalopathy were the most common complications in all etiologies of liver cirrhosis. Conclusion: Viral hepatitis is still a major cause of liver cirrhosis in Iranian population. There is also a significant male predominance among patients with liver cirrhosis secondary to HBV and HCV. Cryptogenic cirrhosis and autoimmune liver diseases including AIH and primary sclerosing cholangitis (PSC) are other main etiologies of liver cirrhosis. Keywords : Liver cirrhosis; Registry; Viral hepatitis

118 Ten-year trend in incidence rate of lung cancer in Golestan province, Iran

Faezeh Salamat1, Abdolreza Fazel2, Khadijeh Amjadi3, Fatemeh Salamat4, Mahmood Khandashpour5, SeyyedMehdi Sedaghat6, Gholamreza Roshandel7 1- Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran 2- Omid Cancer Research Center, Omid preventive medicine and health promotion center, Golestan University of Medical Sciences, Gorgan, Iran 3- Golestan Infectious Disease Research Center, Golestan University of Medical Sciences, Gorgan, Iran. 4- Cancer Research Center, Golestan University of Medical Sciences, Gorgan, Iran. 5- Department of Internal Medicine, Golestan University of Medical Sciences, Gorgan, Iran. 6- Deputy of public health, , Golestan University of Medical Sciences, Gorgan, Iran. 7- Golestan Research Center of Gastroenterology and Hepatology, Golestan University of Medical Sciences, Gorgan, Iran Abstract Abstract Introduction: Cancer is a main cause of death on society in more and less economically developed countries. Lung cancer showed to be responsible for nearly one in five causes of cancer death worldwide (1.59 million deaths, 19.4% of the total). Lifestyle behavior such as smoking, physical activity, poor diet, reproductive changes (including lower parity and later age at first birth) associated urbanization and economic development have been proposed as risk factors for lung cancer. Golestan province, in Northern Iran, within the Asian belt has been known as high-risk area for upper gastrointestinal cancers since the 1970s. In this paper, we will present the trends in incidence rates of lung cancer in Golestan province of during 2004 and 2013. Methods: This cross-sectional study was done based on data from Golestan Population-Based Cancer Registry (GPCR), Iran. The GPCR collected data from public and private diagnostic and therapeutic centers (hospitals, pathology/laboratory centers, imaging centers and selected specialist physician s offices) throughout the province to determine 10-year incidence rate of lung cancer in this population. For coding tumor characteristics, the third edition of the International Classification of Diseases for Oncology (ICD-O-3) was used. The data were analyzed by CanReg-5 software. The number of cases, age specific rates, crude rates and age-standardized incidence rates (ASRs) were calculated. The Segi-Doll world population was used to calculate the ASRs. Results: During this 10-year trend, 1263 new cases of lung cancer were registered in Golestan province. 903 (71.5%) of new cases were male and 360 (28.5%) were female. The mean and standard deviation of age in these patients were 61.91 (23.95) years. Lung cancer incidence rate in men residing urban areas as well as in women residing rural areas has increased significantly, during the studied years. Our findings showed higher incidence rate of Lung cancer in the central and Wstern parts of the province. Conclusion: The difference in incidence rates in different genders and different geographical areas may be due to differences in the prevalence of well-known risk factors for lung cancer, including smoking as well as other unknown risk factors. Considering the increasing incidence rate of cancer in the province, further studies are recommended to determine the main risk factors of lung cancer. Keywords : Lung cancer, Incidence, Golestan, Iran

119 11-13 December 2 0 1 8

Iranian Chronic obstructive pulmonary disease Registry

Hamidreza Jamaati1, Fatemeh Monjazebi2, somaieh Lookzadeh3 1- Chronic Respiratory Diseases Research Center, National Research Institute of Tuberculosis and Lung Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran.Email : [email protected] 2- 3- Chronic Respiratory Diseases Research Center,Department of Medical Surgical Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran.Email :[email protected] 3- Chronic Respiratory Diseases Research Center, National Research Institute of Tuberculosis and Lung Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran.Email : [email protected] Abstract رضورت اجــرا و اهــداف كاربــردي: بیــاری مزمــن انســدادی ریــوی Chronic obstructive pulmonary disease یــا بــه اختصــار COPD التهــاب مزمــن ریــه بــه خصــوص در راه هــای هوایــی و پارانشــیم ریــه اســت کــه در دوره¬هــای عــود بیــاری افزایــش مــی یابــد. بیــاری COPD یکــی از علــل اصلــی مــرگ و میــر در کشــورهای در حــال توســعه و کشــورهای توســعه یافتــه اســت. بــرآورد میشــود تــا ســال2020، ایــن بیــاری پنجمیــن بیــاری ناتــوان کننــده و ســومین علــت اصــي مــرگ و میــر در جهــان باشــد. ثبــت بیــاریCOPD بــا هــدف جمــع آوری اطلعــات ثانویــه مرتبــط بــا بیــاران، بــا تشــخیص قطعــیCOPD، اقدامــات انجــام شــده و اطلعــات کامــل از رشایــط بیــار راه انــدازی شــد. هــدف اصلــی رجیســرتی در بیــاری COPD توصیــف رشایــط بیــاران مبتــا بــه COPD و بررســی تاثیــر ایــن بیــاری بــر روی بیــاران اســت. روش اجـــرا: ایــن مطالعــه یــک مطالعــۀ توســعه ای-کاربــردي بــود. مراحــل اجرایــی ایــن مطالعــه عبــارت بــود از: تهیــۀ پروپــوزال و طراحــی مطالعــه، توجیــه افــراد ذينفــع در طــرح، تعییــن مرکــزی بــه عنــوان رفرنــس جهــت مدیریــت و آمــوزش، تعییــن رشکــت یــا فــردی جهــت طراحــی نــرم افزار،تعییــن بخــش هــای مختلــف نــرم افــزار، طراحــی و تولیــد نــرم افــزار تحقیق،تهیــه فــرم هــا و ابزارهایــی جهــت جمــع آوری اطلعــات از بیــاران، تعییــن مراکــزی کــه تســت ریــوی انجــام میدهنــد، تعییــن داروخانــه هایــی کــه داروهــاي بیــاران ریــوی را در رسارس کشــور توزیــع میکننــد و در نهایــت ارائــۀ نــرم افــزاري جهــت جمــع آوري اطلعــات بیــاری COPD کــه بــه صــورت برخــط)On line( و ثبتــی تولیــد شــوند. ابتــدا کمیتــه رجیســرتی از پزشــکان و متخصصیــن امــر مدیریــت و درمــان ایــن بیــاران تشــکیل شــد و اطلعاتــی کــه مــی بایســت از بیــاران اخــذ شــود و در رجیســرتی نگهــداری شــوند بــه صــورت یــک پرسشــنامه جامــع و کامــل تهیــه شــد. تهیــه ابــزار گــردآوری اطلعــات در ایــن پژوهــش خــود بخشــی از مطالعــه بــود کــه از طریــق پنــل متخصصیــن و ســپس بررســی روایــی آن از طریــق متخصصیــن دیگــر انجــام گرفــت. ســپس فــردی جهــت طراحــی نــرم افــزار مشــخص شــد، بخــش هــای مختلــف نــرم افــزار در پنــل متخصصیــن مشــخص شــده و بــه همــراه پرسشــنامه طراحــی شــده جهــت دریافــت اطلعــات جهــت طراحــی و تولیــد نــرم افــزار تحقیــق بــه فــرد طراحــی کننــده نــرم افــزار داده شــد. بــه طــوری کــه اطلعــات مربــوط بــه بیــاران مبتــا بــه COPD از بــدو ورود در سیســتم بــه طــور الکرتونیــک ثبــت شــود و پرونــده هایــی مشــابه پرونــده الکرتونیــک ســامت بــرای بیــاران تشــکیل شــود.که متامــی اطلعــات بــه همــراه اطلعــات مربــوط بــه آزمایشــگاه و داروخانــه و نتیجــه پیگیــری درمــان بیــار بــه طــور دقیــق ثبــت مــی شــود. بــرای متــام افــراد مرتبــط بــا بیــار ســطح دسرتســی هــای مختلفــی در نــرم افــزار ایجــاد شــد. متامــی کاربــران اعــم از کارشناســان و مدیــران درصورتــی کــه دسرتســی برایشــان تعریــف شــده باشــد مــی تواننــد از ایــن اطلعــات اســتفاده مناینــد. در نهایــت نــرم افــزار جهــت جمــع آوري اطلعــات بیــاری COPD بــه صــورت برخــط)On line( و ثبتــی راه انــدازی شــد. یافتــه هــا: ایــن رجیســرتی در ســال 1395 فعالیــت خــود را در بیمرســتان دکــرت مســیح دانشــوری آغــاز منــود. ایــن بیمرســتان بــه عنــوان ســانرت ریــه رفرانــس پذیــرای بیــاران مبتــا بــه COPD از کل کشــور مــی باشــد و بــه همیــن دلیــل محــل مناســبی بــرای رشوع ثبــت بــوده اســت. تاکنــون اطلعــات 1400بیــار مبتــا بــه COPD )2/79% بیــاران مــرد و 8/20% زن( در ایــن رجیســرتی ثبــت شــده اســت. متوســط ســن بیــاران 8/11±4/63 ســال بــود. متوســط میــزان FEV1 در تســت تنفســی بیــاران 3/17±4/52 ، متوســط میــزان FVC 3/19±3/69 ومتوســط میــزان FVC/FEV1 8/10±1/61 بــود. %53 بیــاران در حــال حــارض ســیگار میکشــیدند و48% از بیــاران ســابقه مــرف ســیگار را داشــتند. 45% بیــاران اکســیژن درمانــی میشــدند. میانگیــن میــزان PCO2 رشیانــی بیــاران 8/11±3/55 و میانگیــن میــزان O2SAT بیــاران 5/15±1/81 بــود. بحــث و نتیجــه گیــری: رجیســ یرت یــک جــزء جدائــی ناپذیــر و رضوری سیســتم هــای جامــع مراقبــت بیــاران مــی باشــد. ایــن سیســتم منبــع داده جامــع، دقیــق و بــه هنگامــی اســت کــه باعــث نظــارت مســتمر بــر رونــد مراقبــت از بیمریهــا مــی شــود و یــک عملکــرد موثــر و مثربخــش را جهــت بهبــود اجــراء برنامــه مراقبــت از بیــاران فراهــم مــی کنــد. اولیــن نظــام ثبــت بیــاری COPD اطلعــات مفیــد و ارزشــمندی را در رابطــه بــا چگونگــی درمــان، پیگیــری و مراقبــت از ایــن بیــاران

120 در اختیــار متخصصیــن و صاحــب نظــران قــرار میدهــد. اســتاندارد ســازی جمــع آوری و آنالیــز داده¬ هــای کلینیکــی بیــاری¬ COPD ، فراهــم آوری آمــار دقیــق و بــه روز از تعــداد و درمــان بیــاران، پیگیــری وضعیــت بیــاران، رشح حــال، ســیر آزمایشــات، علیــم بالینــی، درمانهــا، ســیر بالینــی بیــار و موفقیــت درمــان، ســاماندهی تجویــز داروهــای بیــاری COPD ، جلوگیــری از مــرف بــی رویــه داروهــای بیــاران مبتــا بــه COPD در بیمریهــای دیگــر، یکســان ســازی درمــان بــر اســاس گایــد الیــن ارائــه شــده در ســایت، برقــراری ارتبــاط بیــن ســایت رجیســرتی بیــاران، پزشــکان متخصــص و داروخانــه هــای ارائــه کننــده داروهــای بیــاری COPD ،برقــراری ارتبــاط بیــن داروخانــه هــای ارائــه کننــده داروهــای بیــاری COPD و بیمــه هــای مرتبــط از جمله اهــداف کاربردی رجیســرتی بیــاران مبتــا بــه COPD بــود. واژههاي كليدي: بیمری مزمن انسدادی ریوی، ایران، ثبت بیماری National Trauma Rehabilitation Registry

Atefeh Fekri1, *Kamran Ezzati2,3, Shahrokh Yosefzadeh Chabok4, Atefeh Najafi5, Sajad Rezaei6, Zahra Mohtasham Amiri7, Ali Davoudi Kiakalaye8 1.MSc Student of Physiotherapy, Faculty of Rehabilitation, Tabriz University of Medical Sciences 2.PhD of physiotherapy, Guilan University of Medical Sciences, Road Trauma Research Center 3.Neuroscience Research Center, Poursina Hospital, Guilan University of Medical Sciences 4.Neurosurgeon Specialist, Guilan University of Medical Sciences, Road Trauma Research Center 5.MSc Student of Physiotherapy, Faculty of Rehabilitation, Tehran University of Medical Sciences 6.PhD of Neuroscience, Guilan University of Medical Sciences, Road Trauma Research Center 7.Social Medical Specialist, Guilan University of Medical Sciences, Road Trauma Research Center 8.Social Medical Specialist, Guilan University of Medical Sciences, Road Trauma Research Center E-mail: [email protected] Mobile: 09338469688 Address: Rasht, Namju Street, Road Trauma Research Center Abstract Trauma and especially road trauma is one of the most important issues in underdeveloped countries. Also, it is known as a third cause of mortality and disability in Iran. Traumatic Brain Injury (TBI) and Spinal Cord Injury (SCI) are two major problems after trauma, which have wide range of disabilities and loss of quality of life in patients. Early rehabilitation could increase the patients’ quality of life by saving or improving their functional independence and decreasing social and economic damages. Because of the different and long-term rehabilitation methods existence for these groups of patients, it is necessary to follow and register the rehabilitation data. Studies shows that some countries including India in 2015, Ohio in 2005 and Australia in 2002 have been started this registration and they reported lots of advantages follow this action. But in Iran there is no similar protocol to investigate traumatic patients especially after discharge and often they abandon after hospitalization and there is no unity in utilization of special measurement instrument and questionnaire for patients’ disability assessment. These are highlight to create the systematic registration protocol in Iran health and medical ministry. The spadework of this proposal has been done in 1396 and the Guilan was the first province to do the pilot study basis on Functional Independence Measurement (FIM) and Disability Rating Scale (DRS) questionnaires. This project has 9 phase and finally, it will spread in all over the country. The results of this project could distinguished the faults and advantages of the rehabilitation methods in this patients, create lots of new research aspects and eliminate inessential services to decrease the extra cost of the health system. Key words: Traumatic brain injury, Spinal Cord Injury, Rehabilitation, Registeries, Independence

121 11-13 December 2 0 1 8

Applications of trauma registration system

Sakineh Saghaeeiannezhad Isfahani1, Zahra Zolfaghari2, Asal Aghadavoodian3 1- Professor Assistance, Health Information Technology Research Center, Isfahan university of medical science, [email protected] 2- Master Student of Health Information Technology, Student Research Committee, Isfahan university of medical science, [email protected] 3- Master Student of Health Information Technology, Student Research Committee, Isfahan university of medical science,[email protected] Abstract Introduction: Trauma is one of the most important and growing health problems of the world especially in the middle and low income countries. As 90% of the global burden of trauma occurs in these countries, doubling the mortality rate associated with traumatic diseases in these countries than in high-income countries. Considering that 3.6% of the world's deaths are due to the occur of traumas and are known to be the fourth cause of death in the world, and in Iran, every 20 minutes, one person died due to trauma, so this study was aimed at determine the applications of the trauma registry system. Methods: This study narrative review of the literature review and search the Internet by entering key words to the databases accredited as ISI web of science, PubMed, Elsevier, scholar, Magiran and google search engine only 23 articles were selected in 2010 to 2018. Results: We found that nearly 80% of the articles emphasized the use of this system to reduce the mortality rate and traumatic complications and improve the quality of the treatment process injured patients. 15% of the articles refer to cases such as clinical skills training, conducting research and audit projects. The remaining 5 percent mentioned other uses such as reducing overall costs, managing the trauma burden, developing trauma prevention and control programs, and more. Conclusion: Using the Trauma Registry not only to using information to conduct audits and investigations, clinical training and other applications but can be found the most important goal of using this system, the reduction of mortality and complications due to trauma. Especially in Iran that is one of the developing countries. It also helps to save money in the healthcare sector by reducing casualties and losses. Key words: registry of trauma, trauma, registry, application, injury.

Designing and implementation of regional Registry system of Neuroscience related diseases in 9 th major health education area.

Fariborz Rezaeitalab1, Ali Shoeibi2, Ariane Sadr-Nabavi3, Sajjad Sahab Negah4, Mohsen Foroughipour5, Mohammad Shariati6 1- Dept. of Neurology, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran. 2- Dept. of Neurology, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran. 3- Dept. of Medical Genetics, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran. 4- Dept. of Neuroscience, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran. 5- Dept. of Neurology, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran 6- Dept. of Neurology, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran Abstract بــا توجــه بــه محــول ســاخت علــوم اعصــاب بــه عنــوان یکــی از ماموریتهــای ویــژه، بــه کلن منطقــه نــه آمایشــی کشــور و بــا توجــه بــه آنکــه دانشــگاه علــوم پزشــکی مشــهد بــه عنــوان مرکــز ایــن کلن منطقــه مســوولیت راهــربی، سیاســت گــذاری و ارتقــای وضعیــت علــوم اعصــاب و بیمریهــای مربوطــه را در ســطح کشــور بــه عهــده دارد ، از ایــن رو رضورت راه انــدازی ســامانه رجیســرتیبیمریهای مربــوط بــه علــوم اعصــاب وجــود داشــت. بســیاری از ایــن بیمریهــا، مشــکلت شــایع ســامت جامعــه بــوده 122 و ابتــا بــه آنهــا هزینــه بســیاری بــر جامعــه و خانــواده هــای ایرانــی تحمیــل مــی کنــد . انجــام پژوهشــهای بــا حجــم داده کافــی و دقیــق روی جنبــه هــای مختلــف ایــن بیمریهــا )کــه در برگیرنــده طیــف وســیعی از رشــته هــای مختلــف علــوم پایــه و بالینــی مــی باشــد( کمــک شــایانی بــه حــل مشــکل مربــوط بــه ایــن بیمریهــای شــایع در جامعــه خواهــد کرد.ایــن رجیســرتی وســیع،زیر شــاخه هایــی را خواهــد داشــت کــه در دراز مــدت بتوانــد متــام یــا بخــش کثیــری از بیمریهــای ایــن حیطــه را در برگیــرد. بــا توجــه بــه ایــن نیــاز، رجیســرتی بــرای کل علــوم اعصــاب در ایــران راه انــدازی شــد. علــوم اعصــاب بیمریهــای زیــادی را در حیطــه هــای روانپزشــکی، نورولــوژی ، نوروژنتیــک و جراحــی اعصــاب شــامل مــی گــردد. بــرای ایجــاد ایــن رجیســرتی علــوم اعصــاب اییــن نامــه تدویــن گردیــد و پروپــوزال هــای زیرشــاخهای مربوطــه نوشــته شــد و مینیــال داده هــا تعریــف گردیــد و نــرم افــزار هــای مربوطــه توســط معاونــت پژوهشــی طراحــی و اجــرا گردیــد. ایــن رجیســ یرت بزرگرتیــن رجیســرتی در ســطح کشــور بــرای علــوم اعصــاب مــی باشــد. ثبــت منظــم داده هــای بیــاران مبتــا بــه بیــاری هــای مختلــف حیطــه علــوم اعصــاب در کنــرتل و پیشــگیری و درمــان ایــن بیــاران بســیار بــا اهمیــت بــوده و نقــش مهمــی را ایفــا می¬منایــد . نخســتین گام جمــع آوری منظــم و مــداوم اطلعــات در مــورد بیــاران مبتــا بــه بیــاری هــای فوقــاز جنبــه هــای مختلــف دموگرافیــک، بالینــی، آزمایشــگاهی و پاتولوژیــک مــی باشــد. واژههاي كليدي : رجیسرتی، علوم اعصاب، کلن منطقه 9 National Trauma Rehabilitation Registry

123 11-13 December 2 0 1 8

The Rehabilitation Registry of Traumatic Brain Injury Patients Basis on Disability Rating Scale and Functional Independence Measure Questionnaire at Admission and Discharge Phase During Hospitalization

Kamran Ezzati1,2, Atefeh Fekri3, Shahrokh Yosefzadeh Chabok4, Sajad Rezaei5, Zah- ra Mohtasham Amiri6, Ali Davoudi Kiakalaye7 1.PhD of physiotherapy, Guilan University of Medical Sciences, Road Trauma Research Center 2.Neuroscience Research Center, Poursina Hospital, Guilan University of Medical Sciences 3.MSc Student of Physiotherapy, Faculty of Rehabilitation, Tabriz University of Medical Sciences 4.Neurosurgeon Specialist, Guilan University of Medical Sciences, Road Trauma Research Center 5.PhD of Neuroscience, Guilan University of Medical Sciences, Road Trauma Research Center 6.Social Medical Specialist, Guilan University of Medical Sciences, Road Trauma Research Center 7.Social Medical Specialist, Guilan University of Medical Sciences, Road Trauma Research Center E-mail: [email protected] Mobile: 09338469688 Address: Rasht, Namju Street, Road Trauma Research Center Abstract Traumatic brain injury (TBI) is a common consequence of trauma specially road trauma which lead to functional and mental disabilities in patients. The amount of these disabilities affects the patient’s quality of life and specially their intervention demands. Rehabilitation registry system could create comparison possibility between different TBI patients and different intervention protocols. Therefore, it is necessary to introduce a unique measurement and assessment instruments to compare the patient’s functional status and community integration after their affection. Disability rating scale (DRS) and functional independence measure (FIM) are known as two reliable, sensitive and valid questionnaires to tracking TBI individuals changes from coma to community. In this study we looked for the result of the rehabilitation registry basis on the DRS and FIM questionnaires and the correlation between their scores mean and TBI patients disability at admission and discharge phase. Among 92 TBI patients which referred to the trauma center of poursina hospital, 62 patients were included to this study. The FIM, DRS and demographic questionnaires were completed for them at admission and discharge phase. The FIM has 18 items divided to 2 classifications; 1. Motor functions; 2. Cognitive functions. The range of the FIM scores are between 126 (completely independent) and 18 (complete dependent). The DRS has 8 items separated into 4 categories; 1. Arousal and awareness ; 2. Cognitive ability to perform self-care functions; 3. Functional dependence; 4. Employability. The range of scores are between 29 (severe state) and 0 (no disability). Statistical analysis with SPSS version 23.0 showed significant change in DRS total score mean from admission (22.4) to discharge (12.9) phase and in FIM total score mean from admission (23.08) to discharge (42.78) phase. Another finding was existence of the high and reverse correlation between FIM and DRS total scores mean at admission (R= -%90) and similar correlation at discharge (R= -%62) phase. As conclusion, The DRS and FIM scores mean at admission and discharge phase are meaningfully indicate to the patient’s disability rate and their changes show improvement in TBI patients’ functional disabilities at discharge relation to admission phase. Additionally, There is high percentage of correlation between FIM and DRS questionnaires scores to assessing TBI patient’s disabilities at admission and discharge phase. Key words: Traumatic brain injury, Rehabilitation, Registries, Questionnaire.

124 The first Iranian Cystic Fibrosis RegistryReport:2001-2018

Vahedi L 1, Rafeey M 2, Kalankesh LR3, Dastgiri S4, Jafari-RouhiAH5,Shoaran M6, Yasa- ri S 7 1-7 Liver and Gastrointestinal Disease Research Centre, Cystic Fibrosis Registry ,Tabriz University of Medical Sciences, Tabriz, Iran. Abstract The Iranian Cystic Fibrosis Registry (ICFR) is a centralized database of CF patients in North-western of Iran that collects information on the demographic, clinical data, laboratory results and Fallow upping patients. Information is collected on hospitalizations and outpatients CF patients in the Educational and Treatment Children’s Hospital from 2001 to 2018 with a goal to support research, education and presentation services on CF and develop cooperation with other provinces in Iran. We report here on the characteristics of patients over 17 years in Tabriz University of Medical Sciences, Iran. Of 418 CF patients, 239 (57.2%) were male and 179 (42.8%) female and 94 (22.6%) patients had died. The median age at onset, age at diagnosis, age of death and age for study were 3, 9, 0.4 and 7.8 years, respectively. The frequency of Chronic sinopulmonary disease, Gastrointestinal and nutritional abnormalities, Salt loss syndromes and Genital abnormalities were observed in 215 (51.4%), 272 (65.1%), 168 (40.2%) and 5 (1.2%) patients at lifespan, respectively. More genotypes were heterozygote (41.9%) in compassion with homozygote (31.8%) and compound genotypes (17.7%) with the perdominace of the ΔF508/ΔF508 (26%) genotype among patients. All the information in the ICFR is held confidentially with Linking and distrubing capability for other medical members in Iran. ICFR Report may show an important tool to analyze demogherafic, clinical and paraclinical characteristics of the disease as well as to apply for healthcare governmental programmes based on health care data. The review role of trauma registration in controlling injuries sajjad sangestani1, rahimeh tajvidy asr2, ala usefi3, roghayeh mollaei4 1- Student research committee,School of health management and information sciences, Iran univiersity of medical sciences, Tehran, Iran. 2- Student research committee,School of health management and information sciences, Iran univiersity of medical sciences, Tehran, Iran. 3- Student research committee,School of health management and information sciences, Iran univiersity of medical sciences, Tehran, Iran. 4- Student research committee,School of health management and information sciences, Iran univiersity of medical sciences, Tehran, Iran. Abstract مقدمــه: ثبــت یــک بیــاری، مجموعــه ای از داده هــای بیمرانــی اســت کــه در آن اطلعاتــی که به طور مداوم و سیســتمتیک ثبت شــده را برای پاســخگویی به اهــداف از پیــش تعییــن شــده فراهــم مــی کنــد. صدمــات و پیامدهــای ناشــی از ترومــا علــت اصلــی مرگ درســنین کمــرت از 45ســال می باشــد. ثبــت تروما یک ابــزار مفیــد بــرای دســتیابی به مجموعــه اطلعات قابل اعتــادی از عوامل خطر صدمات و پیامدهــای ناشــی از آن و راه های پیشــگیری از صدمات را محقق می ســازد. مطالعــه حــارض بــا هــدف تبیین نقش سیســتم ثبــت ترومــا در نظــام مراقبت صــورت گرفت تا نتایــج حاصــل شــده از آن در جهت تحقق بخشــیدن به اهــداف کنــ لرت ترومــا بــه کار رود. روش بررســی: مطالعــه حــارض بــا روش مــرور کتابخانــه ای و اســتفاده از کل تم کلیدی مرتبط با ثبــت تروما و کنرتل صدمــات از مقــاالت منایهشــده در پایگاههای اطلعاتی ایرانی SID، Magiran و پایــگاه هــای اطلعاتــی خارجــی ScienceDirect،Pubmed ،EMbase،Web of science ، Scopus انجام شــد. در مجموعه مقاالت بازیابی شــده از پایگاه های اطلعاتی مذکور بین ســال های 2012 تا 2017 ، 31 مقاله مرتبط با پژوهش مورد بررســی قرار گرفتند. یافتــه هــا: بررســی مقــاالت مرتبــط نشــان داد جمــع آوری داده هــای کامــل، جامــع، معتــرب، و راه انــدازی سیســتم ثبــت داده های بیــاران ترومایی به شناســایی پراکندگــی زمانــی و جغرافیایــی ترومــا، تدویــن برنامه های کنرتل و پیشــگیری از تروما، و ارزیابی اثربخشــی این برنامه ها کمک می کند. ضمن اینکه جمــع آوری داده هــای اســتاندارد در اجــرای برنامــه هــای بهبودکیفیــت بیــاران ترومایی، بــرآورد مدت زمان ناتوانی های ناشــی از صدمــات، کاهش تروما، مرگ و میر ناشــی از آن، و هزینــه هــای مســتقیم و غیــر مســتقیم اقتصــادی و اجتمعی نقش قابل توجهــی دارد. نتیجه گیری: ثبت صحیــح اطلعات ترومایی و مدیریت بهینــه آن در بهبــود و اثربخشــی اقتصــادی هزینــه های خدمات بهداشــتی، کنرتل صدمــات و بهبود کیفیت مراقبت از بیمران ترومایی بســیار موثر اســت. واژههاي كليدي :ثبت، تروما، کنرتل صدمات. 125 11-13 December 2 0 1 8

Designing Multiple Sclerosis registry program in Ardabil Province: a new experience

Firouz Amani*, Vahid Abbasi Faculty of Medicine, Ardabil University of Medical Science, Ardabil, Iran. [email protected]

Abstract Multiple Sclerosis (MS) is one of the neurologic diseases that in women was three time more than men. Ardabil is a province in north-west of Iran with moderate prevalence of MS that estimated to have about 700-900 MS patients. Due to lack of a registry system in Ardabil for MS patients, the aim of this study was to establish and design a registry program under Web for MS patients in Ardabil province. This registry based study has been done on all diagnosed MS patients in Ardabil province from 2010 to 2018. Information of about 800 MS patients collected by a checklist and then entered in the software and also on the web which designed for this goal. We establish a system for registry MS data and also MS new cases in future that has been done in the research center of Alavi hospital in Ardabil city by neurology department. This website is available from http://10.17.250.44 in the domain Msreg.arums.ac.ir. The successful design of this registration system in a smaller dimension in Ardabil province could be effective to having databank of MS patients in future and programing for therapeutic goals of these patients. Keywords: Multiple Sclerosis, neurologic disorder, data registry, Ardabil

The Objectives of the Cancer-Focused Non-Contagious Disease Registration System and providing Effective Strategies

Sakineh Saghaeiannejad Isfahani1, Behnaz pouriayevali*2 1- Assistant Professor, Health Information Technology Research Center, Isfahan University of Medical Science, Isfahan, Iran. Email: [email protected] 2- *MSc Student of Health Information Technology, Student Research Committee, Isfahan University of Medical Sciences, Isfahan, Iran. Email: [email protected] Abstract Today, the program for disease and health outcomes, as one of the major infrastructures in the expansion and enrichment of medical research, is on the agenda of the Deputy Director of Research and Technology of the Ministry of Health. This program has been implemented with the participation of universities and medical research centers and leads to the systematic and continuous production of quality data from a variety of diseases or health outcomes in the country. On the other hand, access to treatment and appropriate treatment is essential to research about non-communicable diseases, including cancer and its control, because success in cancer control is a prerequisite for acquiring new methods of prevention and treatment. Finally, due to the importance of the subject, this study was conducted to determine the goals of cancer-based non-communicable diseases registration system as a narrative review study. The information and data needed were also collected using various Persian and Latin books and articles and searches on valid websites and databases. As a result, the Cancer Registry System is an information system designed to collect cancer patient data, organize data and analyze cancer data, and can address many of the challenges faced by patients, doctors and decision makers. Recovers the health area. Therefore, in order to improve the progress of

126 the cancer incidence process, it is suggested that policymakers and decision-makers of health with proper application strategies and micro and macro planning will work towards the effective set up and monitoring of information systems in order to be effective in preventing, Control and treatment of cancer patients, and was more effective in improving the health of the country. Keywords: disease registration system, non-communicable diseases, non-contagious disease, cancer, health.

Development of a Model for Multiple Sclerosis Surveillance

Kimia Ahmadi1, Maryam Ahmadi2, Mohammad Ali Sahraian3 1- PhD student 2- Professor 3- Professor Abstract Introduction: The incidence and prevalence of MS in Iran is steadily increasing and the health system faces increasing burden of the disease. Regarding the constructing role of MS surveillance in effective health information management for disease control at macro and micro level of the health system and the constructing role of MS registry as data infrastructure for MS surveillance, this research was conducted. Method: This applied-fundamental study was carried out in three phases. In the first step, for identifying the status of the MS surveillance in the selected countries and Iran, literature review and correspondence with authorities of these registries, referring to the treatment deputy of the MOHME, the MS Society, studying the MS patients’ outpatient and inpatient medical records and a semi-structured interview with the participation of experts was done. The first step deliverable was, the MS surveillance proposed model with 7 axes and 145 straps. In the second step, experts’ opinions were obtained about the proposed model using two researcher-made questionnaires for examining the structure characteristics of the MS surveillance, its minimum data set. The second step deliverable was the MS surveillance final model with 7 axes and 151 straps. In the third step, a number of Key Performance Indicators for MS surveillance was implemented using data obtained from MS patients’ medical records of the Sina Hospital and Qlikview software. The usability of the dashboard was assessed using System Usability Scale. The third step deliverable was the” MS surveillance dashboard”. Findings: The final model of MS surveillance was developed in the form of 7 general axes (structure, data collection, minimum data set, dissemination and distribution of information, quality control, confidentiality and system evaluation) and 151 components based on research objectives. Its minimum data set included 40 core data elements. The MS surveillance dashboard implemented using 45 key performance structure, process and outcome indicators arranged in three layers of dashboard; patient, regional and country layers. The MS surveillance dashboard’s usability was assessed at accepted range (%81) with the participation of Sina MS research center’s faculty members. Conclusion: The MS registry acts as the heart of the surveillance. The first step to develop MS surveillance is developing the disease registry and then the registry information to control the state of the disease in the country. This research is complementary to the MS computerized system in the Ministry of Health, and indicates the desirable state of the MS disease surveillance for the country.

127 11-13 December 2 0 1 8

Establishment of Biobank of Famenin Brucellosis Cohort, Hamadan, Iran

Dr. Maryam Adabi1, Dr. Fariba Keramat2, Dr. Manoochehr Karami3 1- Brucellosis Research Center, Hamadan University of Medical Sciences, Hamadan, Iran 2- Research Center for Health Sciences, Hamadan University of Medical Sciences, Hamadan, Iran 3- Brucellosis Research Center, Hamadan University of Medical Sciences, Hamadan, Iran Abstract Background: Human biobanks are collection of biological samples and health information from a large number of participants generally in the cohort studies. Famenin brucellosis cohort with long-term follow-up with a large number of participants is the first prospective cohort study about brucellosis in Iran. Since Hamadan province is a very high incidence region of brucellosis in Iran, it is necessary to know about the brucellosis colonization patterns in communities to implementation of preventive activities. This cohort designed to investigate clinical and sub-clinical forms of brucella infection in the selected population. Consequently we aimed to storage biospecimens of participants including whole blood, red blood cells (RBC), buffy coat, plasma, serum, DNA and RNA that derived from blood in human biobanks in different phases of study to future organization of biomedical research for upgrading the knowledge of brucellosis in Iran. Description: At the first phase of study, during September to December 2016, after classification of urban and rural areas and regarding the incidence of the disease in Famenin (a city in Hamadan as pilot) clusters selected systematically from each category. Finally, 3363 persons were considered and a full questionnaire including demographic data, occupation, history of fever or brucellosis and other important related data were gathered for each one. At the next, blood sampling for further analysis and completion brucellosis examination were done. Of the 3363 individuals, our biobank now contains over 2433 serum samples were collected. 67.8% from rural areas and 32.2% from urban areas; which of them 44.8% were male and 55.2% were female. To optimum qualities of biological samples in long time storage for future assays, all samples gathering in different phases will stored systematically at -85˚C at ultra-freezers in brucellosis cohort biobank in Hamadan. During periodic sampling from participants, the biobank allows unique experiments to be performed. The collection is ideal for studies that: a)Measure dynamic change from healthy to disease onset, B)Assess biomarkers across a population, C)Include confounding diseases, E)Address biomarker changes over time within healthy and patients individuals. Conclusions: Famenin cohort of brucellosis is a big public cohort study approximately demonstrative of the Hamadan province’s population. This study delivers us a wide range of information about different aspects of brucellosis spread, allowing examination of many research questions. In addition, one of the main motivations of this cohort study is providing a complete biobank to have platform for other studies to respond to the knowledge gap existing about brucellosis. Participants will be followed up for 4 next years to examine clinical profiles of brucellosis and complete investigation to reach strategies to control and reduce human and animal brucellosis. At the present our data collection are not free to access but we welcome to any considered collaborations: for any collaboration be in contact with. ([email protected]) Keywords : Hamadan, brucellosis, cohort, biobank, biosamples

128