Ref. Ares(2019)2255680 - 29/03/2019 “This Deliverable is a part of the joint action “724161/JARC” which has received funding from the European Union’s Health Programme (2014-2020)”. “The content of this Deliverable represents the views of the authors only and they are sole responsibility: it can not be considered to reflect the views of the European Commission and or the Country, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may of the information it contains”. Deliverable no: D8.2 Title: Report summarizing the status of the development of UEMS-EU harmonized educational principles and recommended training materials for rare cancers 1 Table of contents 1. Description 3 1.1 The Joint Action on Rare Cancers 3 1.2 Work Package X 3 1.3 Aim and purpose of deliverable 3 1.4 The target group of the specific deliverable 4 1.5 Summary of the main conclusions of the deliverable 4 2. Introduction 4 3. Material and method 4 4. Results 4 5. Discussion 4 2 Table of contents 1. Description 1.1 The Joint Action on Rare Cancers Description The Joint Action on Rare Cancers (JARC) is aimed to integrate and maximize efforts of the European Union (EU) Commission, EU Member States and all stakeholders to advance quality of care and research on rare cancers. The public health challenges posed by rare cancers include the limited professional expertise in the community, the difficulties in clinical research, the need of a timely and appropriate diagnosis and optimal treatment from the very beginning of the patient’s journey. An accurate clinical, pathologic and biological assessment of the disease of the individual patient is key to survival and cure, as well as an expert clinical decision provided by a multidisciplinary team. To this end, proper referral of patients and effective clinical networking are crucial in rare cancers. This is the main reason why JARC decided to shape its efforts around the new European Reference Networks (ERNs) with the following objectives: 1. Improving epidemiological surveillance of rare cancers in the EU 2. Identifying standards of care for all families of rare cancers to ensure sharing of best practices and equality of care for rare cancers across Europe, particularly through clinical networking 3. Improving the implementation at local level and within ERNs of clinical practice guidelines on rare cancers 4. Promoting integration of translational research innovations into rare cancer care 5. Improving education on rare cancers for medical and non-medical experts to ameliorate management of rare cancers and to improve rare cancer patients’ empowerment in the EU 6. Identifying core strategies to incorporate in National cancer plans and Rare disease plans to address the specific needs of rare cancers across EU MSs The JARC is structured in 10 work packages (WPs). Three cross cutting WPs (WP1 coordination, WP2 dissemination, WP3 evaluation) and 7 specific WPs based on the JARC objectives: WP4 epidemiology, WP5 quality of care, WP6 clinical practice guidelines, WP7 innovation and access to innovation, WP8 medical education, WP9 childhood cancers and, WP10 rare cancers policy. Patients work across all work packages, driving the JARC efforts along the needs of the only end users of all what we can do, in care and research as well. 1.2 Work Package WP8 This WP was devoted to work on different aspects of medical education of experts involved in the diagnostics and care of rare cancer patients. A major issue was to map educational resources available for experts involved in the treatment of rare cancers, including childhood cancers, targeting both the undergraduate and the postgraduate medical training; to identify how to improve, enlarge and harmonize their educational offer on rare cancers and how medical education on all families of rare cancers can be integrated into ERNs, and into the pan- European qualified training and assessment systems. As a means to address specific needs of medical education in rare cancers, a survey on under- and postgraduate training programs was conducted. 1.3 Aim and purpose of deliverable The best description of the original goals of D8.2 is that the goals included, that considering all available resources, a long-term goal was to provide recommendations on how to connect educational instruments with the networked daily rare-cancer health care. The goals included to provide recommendations on the development of postgraduate training systems, assessment and training-accreditation criteria and guidelines in 3 collaboration with the specific Sections of the European Union of Medical Specialists (UEMS), as well as on training requirements in Europe (ETR). This included exploring the model of “physician-scientists”, in an effort to bridge the gap between basic and translational research, and exploring how ERNs can be involved. 1.4 The target group of the specific deliverable Medical experts, laboratory experts, nurses and counsellors, advocacy groups experts, patients, ultimately besides the persons mentioned, all medical specialist could be targeted in some extenet with specific rare cancer aspects. 1.5 Summary of the main conclusions of the deliverable The survey revealed several weaknesses in the current status in medical expert training. 2. Introduction The UEMS, UEMS Multidisciplinary Joint Commettee of Rare and Undiagnosed Diseases (MJC RUD), UEMS Section of Medical Genetics (SMG), the European Board of Medical Genetivs (EBMG), and the European Society of Human Genetics (ESHG) were involved in part as partners in almost all objectives of WP8 (Medical education). 3. Material and method There was a "survey" and an "Expert meeting" 4. Results Resuts of the Survey could be found in the Appendix. 5. Discussion Involvement of the UEMS into the WP8 tasks was a priority from the beginning of the JARC, and we proceeded with the parallel on different activities. The UEMS was involved in the task of Survey on the Medical Education. During the design, we used the listed and recognized official UEMS medical disciplines. The survey was circulated amongst the UEMS sections, multidisciplinary joint committees, and thematic federations; finally we got 69.2% respones from UEMS members. The results were discussed amongst the members of the Section of Medical Genetics and Multidisciplinary Joint Committee on rare and Undiagnosed Diseases. The same stands for the M8.2: List of recommendations on how to connect educational instruments with the networked daily rare-cancer health care available discussed among WP8 partners; and for the M8.3 to improve the training of non-MDs. Both of them were discussed by UEMS experts, and by the EBMG (European Board of Medical Genetics) members and its General Assembly, which is a strategic partner of the UEMS. The conclusions of the survey are summerized in the attached appendix, the messages usually are clear. After the Milano GA meeting a decision was taken to proceed with the UEMS MJC RUD in the direction towards establishing a European Examination of Rare Adult Solid Cancers. At the October's Council meeting, the MJC RUD gathering decised and the first draft of the ETR (European Training Requirement, attached) with a first version of Syllabus was introduced at the Budapest Expert meeting. The participants agreed that this is a kind of milestone; this draft will be used for further development. 4 Attached materials: 1., Survey with evaluation 2., Draft of ETR of Rare Solid Adult Cancers 3., Syllabus 5 Joint Action on Rare Cancers Survey on Medical Education for Undergraduates and Postgraduates 2017 Online Survey and Results 6 I. Joint Action on Rare Cancers - Survey on Medical Education for Undergraduates and Postgraduates * Required 1. BASICS Within the framework of Joint Action on Rare Cancer (http://jointactionrarecancers.eu/) WP8 you are invited to participate in the following survey. Our goal is to collect data on the education and training programs currently available for under- and postgraduates related to the rare cancers, including childhood cancers. In the present survey the current classification of the rare cancers is the reference material: 1. Head and neck cancers (cancers of nasal cavity and sinuses, nasopharynx, hypopharynx, larynx, salivary glands, oropharynx, oral cavity and lip, eye, middle ear) 2. Thoracic rare cancers (tumours of trachea, thymus, malignant mesothelioma) 3. Male genital and urogenital rare cancers (tumours of testis, penis, renal pelvis, ureter, urethra and extragonodal germ cell tumours) 4. Female genital rare cancers (tumours of vulva and vagina, non epithelial tumours of ovary, trophoblastic tumours of the placenta) 5. Neuroendocrine tumours 6. Tumours of the endocrine organs (cancers of thyroid, parathyroid, adrenal cortex, pituitary gland) 7. Central Nervous System tumours (Glial tumours, medulloblastoma, malignant meningioma) 8. Sarcomas (sort tissue sarcomas, bone sarcomas, gastrointestinal stromal tumours) 9. Digestive rare cancers (Tumours of small intestine, anal canal, gallbladder and extrahepatic biliary duct) 10. Rare skin cancers and non-cutaneous melanoma (melanoma of mucosae and of the uvea, adnexal skin carcinomas, Kaposi sarcoma) 11. Haematological rare malignancies (acute myeloid leukemia, myeloproliferative neoplasms, myelodisplastic and myeloproliferative neoplasms, histiocytic and dendritic cell neoplasms) 12. Pediatric cancers (all pediatric cancers are considered as rare cancers) 7 1. YOUR DATA 1. Your affiliation (Tick all that applies) * Check all that apply. Medical University . Other University . Healthcare Provider . Other: 2. Your Training (Tick all that applies) * Check all that apply. MD . PhD . Other: 3. Your Age * Mark only one oval. 20-30 . 31-40 . 41-50 . 51-60 . 61< 4. Your Nationality * 5. Are you involved in JARC? * Mark only one oval. Yes . No 8 6. Are you involved in any UEMS activity? * Mark only one oval. Yes . No Your Name (obligatory if you have JARC or UEMS affiliation): Skip to question 8. 2. UNDERGRADUATE TRAINING 7. Are you involved in the training of medical students? * Mark only one oval.