WEST VIRGINIA DEPARTMENT OF HEALTH AND HUMAN RESOURCES West Virginia Cancer Registry 2 0 0 7 POLICY AND PROCEDURE MANUAL Facility-Based Registry Edition Bureau for Public Health 350 Capitol Street, Room 125 Charleston, WV 25301 Joe Manchin III, Governor Martha Yeager Walker, Secretary 2007 Policy and Procedure Manual Facility-Based Registry Edition Joe Manchin III Governor Martha Yeager Walker Secretary, Department of Health and Human Resources Chris Curtis, MPH Acting Commissioner, Bureau for Public Health Catherine Slemp, MD, MPH Acting State Health Officer, Bureau for Public Health Joe Barker, MPA Director, Office of Epidemiology and Health Promotion Loretta Haddy, PhD Director, Division of Surveillance and Disease Control Patricia Colsher, PhD Director/Epidemiologist, West Virginia Cancer Registry Cover images courtesy of the National Cancer Institute Visuals Online. Top left: Medulloblastoma. Top right: Ependymoma. Lower left: Oligodendroglioma. Lower right: Glioblastoma. Manual Prepared and Cover Design, Graphics and Layout by: Patricia Colsher, PhD Director/Epidemiologist, West Virginia Cancer Registry Materials Reviewed by: Darlene Maxwell, CTR Leslie Boner, CTR Lee Ann Phalen, CTR WVCR Data Quality Staff WVCR Staff Patricia Colsher, PhD Director/Epidemiologist Darlene Maxwell, CTR Data Quality/Training Leslie Boner, CTR Data Quality/Training Lee Ann Phalen, CTR Data Quality/Training R. Neal Kerley, CTR Systems Management Brenda Shehab Surveillance Stephen Williams Surveillance Judy Arbogast Surveillance Jena Webb Support Services CHAPTER 5: CASE ASCERTAINMENT Table of Resources 20 General Guidelines 20 Contents Screening Lists of ICD-9 Codes 21 Other Sources to Review 23 CHAPTER 1: THE WEST CHAPTER 6: VIRGINIA CANCER ABSTRACTING OVERVIEW REGISTRY Resources 25 Mission 1 Introduction to Abstracting 26 Geographic Coverage 1 Temporal Coverage 2 CHAPTER 7: Confidentiality 2 ABSTRACTING: GENERAL ISSUES Release of Identified Information 2 Text Documentation 60 Funding 3 Ambiguous Terminology 62 Certification 3 Descriptive Tumor Size 64 Use of WVCR Data 3 CHAPTER 8: CHAPTER 2: HEALTH ABSTRACTING: PATIENT INSURANCE PROTABILITY IDENTIFICATION AND ACCOUNTABILITY Name 65 ACT Social Security Number 66 Permissibility of Reporting 4 Address 67 West Virginia HIPAA Resources 4 Telephone 69 Other HIPAA Resources 5 Marital Status 70 County at Diagnosis 71 CHAPTER 3: REPORTING REQUIREMENTS Age at Diagnosis 72 Reportable Diseases 6 Place of Birth 73 Computerized Edits 9 Date of Birth 74 Timeliness 9 Occupation and Industry 75 Data Format 9 Census Tract & Associated Items 76 Method of Reporting 10 Race 77 Spanish/Hispanic Origin 80 CHAPTER 4: REQUIRED IHS Link 82 DATA ELEMENTS Computed Ethnicity & Source 83 Determination 11 Sex 84 Summary of Required Items 12 Tobacco History 85 Alcohol History 86 iii Family History of Cancer 87 Positive Regional Nodes 187 Regional Nodes Examined 189 CHAPTER 9: ABSTRACTING: CANCER Sites of Distant Metastases 191 IDENTIFICATION Tumor Marker 1 192 Date of Diagnosis 88 Tumor Marker 2 193 Primary Site 92 Tumor Marker 3 195 Laterality 95 Summary Staging 196 Number of Primaries 1/1/93 to 12/31/06 99 Collaborative Staging 211 Number of Primaries 1/1/07 forward 122 CS Tumor Size 215 Ambiguous Termonology MP/H 130 CS Extension 220 Date Conclusive Termonology MP/H 134 CS Tumor Size/Extension Evaluation 221 Multiplicity Counter MP/H 135 CS Lymph Nodes 223 Date Multiple Tumors MP/H 138 CS Nodes Positive 226 Type of Multiple Tumors MP/H 140 CS Nodes Examined 228 ICD-O-3 Histologic Type 142 CS Lymph Node Evaluation 230 Behavior Code 149 CS Metastases at Diagnosis 231 Grade 151 CS Mets at Diagnosis Evaluation 233 Diagnostic Confirmation 162 CS Site Specific Factor 1 235 CS Site Specific Factor 2 238 CHAPTER 10: ABSTRACTING: CS Site Specific Factor 3 240 REPORTING SOURCE CS Site Specific Factor 4 242 Reporting Source 165 CS Site Specific Factor 5 244 Place of Diagnosis 167 CS Site Specific Factor 6 246 Primary Payer 168 Coding None vs. Unknown 248 Physicians 171 Abstracted by 173 CHAPTER 12: Accession Year 174 ABSTRACTING: Abstract Number 175 TREATMENT Sequence Number 176 Introduction 250 Date First Contact 178 First Course of Therapy 251 Medical Record Number 179 Date Therapy Initiated 259 Class of Case 180 Surgery of Primary Site 262 Surgical Margins 264 Scope of Regional Lymph Node Surgery 265 CHAPTER 11: Surgical Procedure of Other Site 267 ABSTRACTING: STAGING Reason No Surgery 268 Introduction 182 Radiation 270 Tumor Size 184 Radiation Sequence with Surgery 275 Descriptive Equivalents of Size 186 iv APPENDIX E Reason No Radiation 277 USPS ZIP Codes 349 Chemotherapy 278 Hormone Therapy 282 APPENDIX F Immunotherapy 285 FIPS Codes for West Virginia 376 Hematologic / Endocrine 289 Palliative Procedure 293 APPENDIX G Other Therapy 294 Race and Nationality Descriptions 378 Systemic/Surgery Sequence 299 APPENDIX H SEER Geocodes 390 CHAPTER 13: ABSTRACTING: APPENDIX I OUTCOMES Customizing the Newest CS Manual 407 Date of Last Contact 301 Vital Status 303 APPENDIX J Autopsy 304 Head & Neck SSF 414 Cause/Underlying Cause of Death 305 Colon, Rectosigmoid and Rectum SSF 420 Place of Death 306 Liver SSF 421 Pleura SSF 423 Melanoma SSF 424 CHAPTER 14: QUALITY CONTROL Mycosis Fungoides SSF 427 Faciloty Activities 307 Breast SSF 428 WVCR Activities 308 Ovary SSF 435 Placenta SSF 436 CHAPTER 15: NEW FOR Prostate SSF 437 CASES DIAGNOSED IN 2007 Testis SSF 450 Changes 309 Retinoblastoma SSF 455 Brain SSF 458 APPENDIX A Thyroid SSF 459 West Virginia Code and Rule 310 Kaposi Sarcoma SSF 460 Lymphoma SSF 461 APPENDIX B USDHHS and NAACCR HIPAA Materials 316 APPENDIX C West Virginia Hospitals 323 APPENDIX D USPS Abbreviations 328 v Chapter 1 The West Virginia Cancer Registry Chapter 16-5A-2a of the The West Virginia Cancer Registry (WVCR) was established by the West Virginia West Virginia Code and Department of Health and Human Resources in 1991 as a breast and cervical cancer Title 64, West Virginia registry. In 1993, WVCR became an all-site registry, collecting data on all cancers Administrative Rules, except basal and squamous cell carcinoma of the skin and in situ cervical cancer. In Division of Health, Cancer 2002, 2 years prior to the Federal mandate, WVCR began collecting data on non- Registry, Series 68, which provide the legal basis for malignant brain and other central nervous system tumors. WVCR is funded by both WVCR, appear in State and Federal funding, with the latter administered through a cooperative Appendix A. agreement with the Centers for Disease Control and Prevention’s National Program of Cancer Registries. Mission The West Virginia Cancer Registry will collect and analyze cancer data to determine incidence rates by anatomical site, sex, race, geographic location, and other factors and monitor trends in cancer incidence and among West Virginia residents. Geographic Coverage The West Virginia Cancer Registry collects information on all cancers diagnosed and/or treated in the state of West Virginia and, through lawful reciprocal data sharing agreements, all cancers diagnosed and/or treated among West Virginia 1 residents by health care providers outside the state of West Virginia. A resident is a person reporting a West Virginia address at the time of diagnosis. Temporal Coverage The West Virginia Cancer Registry’s reference date (the start date after which reportable cancer cases must be included in the registry ) is January 1, 1993 for all cancer sites. The reference date for benign brain and CNS neoplasms is January 1, 2002. Confidentiality All West Virginia Cancer Registry employees sign a confidentiality pledge that meets the requirements of applicable state laws as well as the requirements of the Health Insurance Portability and Accountability Act (HIPAA). West Virginia code protects the confidentiality of both patient and health care provider. Legal analysis of the applicable state laws concerning the establishment and operation of the West Virginia Cancer Registry found that the West Virginia laws were, with one exception (specification of de-identification methodology), more stringent than HIPAA (http://www.wvdhhr.org/hipaa/documents/pre_matrix.pdf, pages 17 and 18 of the PDF). Release of Identified Information West Virginia code permits release of identified data only under two circumstances: 1. Data provided by a facility or reporter may be provided back to that facility or reporter as a failsafe in the event of catastrophic data loss. However, ONLY data provided by the facility or reporter may be provided. Additional information provided by other sources may NOT be disclosed. 2. When a lawful reciprocal data sharing agreement exists, WVCR may provide identified data about another state or territory’s residents or tribal entity’s members diagnosed and/or treated in West Virginia back to the state/territory/tribal entity, which, in turn, is to provide WVCR with identified data on West Virginia residents. 2 Funding The West Virginia Cancer Registry is funded by appropriations made by the State of West Virginia and by the Centers for Disease Control and Prevention’s National Program of Cancer Registries (NPCR). Additional information about the National Program of Cancer Registries is available from the CDC website at http://www.cdc.gov/cancer/npcr/about.htm. Certification The West Virginia Cancer Registry is subject to certification by the North American Association of Central Cancer Registries (NAACCR). Certification is based on timeliness, completeness and data quality. WVCR was certified at the “silver”