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Standards and Guidelines for Cancer Registration in Europe INTERNATIONAL AGENCY FOR RESEARCH ON CANCER The International Agency for Research on Cancer (IARC) was established in 1965 by the World Health
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Standards and Guidelines for Cancer Registration in Europe INTERNATIONAL AGENCY FOR RESEARCH ON CANCER The International Agency for Research on Cancer (IARC) was established in 1965 by the World Health Assembly, as an independently financed organization within the framework of the World Health Organization. The headquarters of the Agency are at Lyon, France. The Agency conducts a programme of research concentrating particularly on the epidemiology of cancer and the study of potential carcinogens in the human environment. Its field studies are supplemented by biological and chemical research carried out in the Agency s laboratories in Lyon, and, through collaborative research agreements, in national research institutions in many countries. The Agency also conducts a programme for the education and training of personnel for cancer research. The publications of the Agency are intended to contribute to the dissemination of authoritative information on different aspects of cancer research. Information about IARC publications and how to order them is available via the Internet at: EUROPEAN NETWORK OF CANCER REGISTRIES (ENCR) The European Network of Cancer Registries (ENCR) project, established within the framework of the Europe Against Cancer Programme of the European Commission in 1989, has been in operation since The main goal of the Network is to improve the quality, comparability and availability of information on occurrence and outcome of cancer in Europe. The specific objectives of the Network are: to improve the quality, comparability and availability of cancer incidence data, to create a basis for monitoring cancer incidence and mortality in the European Union, to provide regular information on the burden of cancer in Europe, to promote the use of cancer registries in cancer control, health-care planning and research. The Network promotes collaboration between cancer registries, defines data-collection standards, provides training for cancer registry personnel and regularly disseminates information on incidence and mortality from cancer in the European Union and elsewhere in Europe. The main fields of ENCR activity are: 1) Standardization of registry procedures on: (a) data definitions (b) data collection procedures (c) analysis and reporting methods 2) Central collection and validation of data 3) Dissemination of information 4) Training Specific activities of the ENCR include surveys of the registries, Working Groups on definitions and coding, fellowships for registry personnel, consultancies, courses (on cancer registration, statistical methods, and coding), workshops, development and maintenance of cancer databases and software (i.e. EUROCIM, EUCAN, ACCISpass), and publications on cancer occurrence in Europe. All activities of the ENCR are available to its 185 member registries and are announced at its Internet site: E N C R WORLD HEALTH EUROPEAN NETWORK OF EUROPEAN ORGANIZATION CANCER REGISTRIES COMMISSION Standards and Guidelines for Cancer Registration in Europe THE ENCR RECOMMENDATIONS Volume I Edited by: Jerzy E. Tyczynski, Eva Démaret, D. Maxwell Parkin IARC Technical Publication No.40 International Agency for Research on Cancer Lyon, 2003 Published by the International Agency for Research on Cancer, 150 cours Albert Thomas, Lyon cédex 08, France International Agency for Research on Cancer, 2003 Distributed by IARCPress (fax: ; and by the World Health Organization, Marketing and Dissemination, CH-1211 Geneva 27 (fax: ) Publications of the World Health Organization enjoy copyright protection in accordance with the provisions of Protocol 2 of the Universal Copyright Convention. For rights of reproduction or translation of WHO publications, in part or in toto, application should be made to the Office of Publications, World Health Organization, Geneva, Switzerland. The World Health Organization welcomes such applications. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the Secretariat of the World Health Organization concerning the legal status of any country, territory, city, or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. The mention of specific companies or of certain manufacturers' products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. The authors alone are responsible for the views expressed in this publication. Neither the European Commission nor any person acting on its behalf is liable for any use made of the following information. Distributed on behalf of the International Agency for Research on Cancer by the Secretariat of the World Health Organization. IARC Library Cataloguing in Publication Data European Network of Cancer Registries Standards and guidelines for cancer registration in Europe : the ENCR recommendations / editors, Jerzy E. Tyczynski, Eva Démaret, D. Maxwell Parkin. (IARC technical publication ; no. 40) 1.Neoplasms epidemiology 2.Registries standards 3.Data Collection 4.Europe I.Tyczynski, Jerzy E. II.Démaret, E. III.Parkin, D.M. IV.Title V.Series ISBN (NLM Classification QZ 200) Printed in France Contents Foreword List of contributors Introduction vii ix xi Chapter I ENCR recommendations on registry practices 1 I.1 Minimum data-set 1 I.2 Incidence date 1 D. Pheby, M. Sauvage, C. Martínez García, L. Schouten I.3 Basis of diagnosis 2 J. Smith, R. Frost, L. Teppo, O. Visser I.4 Topography, morphology, behaviour 3 I.5 Recording multiple primary tumours 4 D. Pheby, C. Martínez Garcia, M. Sauvage, L. Schouten I.6 Recording bladder tumours 6 D. Pheby, M. Sauvage, C. Martínez García, L. Schouten I.7 Recording central nervous system tumours 7 D. Pheby, M. Sant, J. Ironside, W.M. Molenaar I.8 Recording non-melanoma skin cancers 10 T. Davies, M. Page, J.W. Coebergh I.9 Method of detection in relation to screening 14 L. Schouten, H. Botha, E. Paci I.10 Recording and coding extent of disease 15 F. Berrino, C. Brown, T. Möller, L. Sobin, J. Faivre Chapter II Guidelines on confidentiality in population-based cancer registration in the European Union 27 H. Storm, E. Buiatti, T. Hakulinen, H. Ziegler Appendices 1. EUROCIM software and databases 51 F. Bray, J.E. Tyczynski, J. Ferlay 2. Structured reviews of cancer registries a questionnaire ACCIS 69 E. Steliarova-Foucher 4. Automated cancer registration 75 L. Simonato, E. Demaret 5. List of ENCR publications List of ENCR member registries 83 v Foreword When the European Commission established the Europe against Cancer programme more than a decade ago, one of the priorities was to promote high quality cancer registration within Europe. The aim was to achieve comparable information on cancer burden, which could be used for setting up and evaluating cancer control activities at the European level. To achieve this aim, the European Network of Cancer Registries (ENCR) was established, and has now been active for 13 years with the financial support of the Cancer Programme of the European Union. Since cancer registries play an important role in planning and managing cancer control activities, one of the major tasks of the ENCR has been to provide support for the creation and development of cancer registries in Europe. Planning and monitoring of such activities as prevention, early detection, treatment, rehabilitation and palliative care require knowledge about national and local cancer patterns and trends. Priority setting for cancer care implies knowledge of how many patients develop cancer, and what are the most frequent sites. Assessment of the efficacy of programmes of prevention, early detection (screening) and the effectiveness of treatment procedures can all be achieved through the use of cancer registry data (e.g., by analysing trends in incidence, stage of disease, and survival). All these activities depend on the quality of the data in the registry that they are comparable, complete and of good quality. To achieve this, the ENCR has established Working Groups aimed at developing standards and recommendations in relation to different aspects of cancer registry practice. Some of these guidelines and recommendations deal with technical aspects of data collection, others with problems of confidentiality and privacy protection within the process of cancer registration. All the topics considered by ENCR Working Groups, and published in this monograph, are of fundamental importance to cancer registration, and, hence, to cancer control activities within the European Union and in Europe as a whole. This monograph provides a set of the most up-to-date guidelines and recommendations prepared by ENCR Working Groups and approved by the ENCR Steering Committee and will be a useful tool for people involved in collection and registration of cancer data in Europe. David Byrne Commissioner Health and Consumer Protection European Commission vii List of contributors Dr Franco Berrino (Chapter I, section I.10) Lombardy Cancer Registry Milan, Italy Dr Hannes Botha (Chapter I, section I.9) Trent Cancer Registry Sheffield, UK Mr Freddie Bray (Appendix 1) IARC/ENCR Lyon, France Dr David Brewster (Appendix 2) Scottish Cancer Registry Edinburgh, Scotland, UK Dr Clem Brown (Chapter I, section I.10) East Anglian Cancer Registry Cambridge, UK Dr Eva Buiatti (Chapter II) Azienda Sanitaria di Firenze Florence, Italy Dr Jan Willem Coebergh (Chapter I, section I.8) Eindhoven Cancer Registry Eindhoven, The Netherlands Dr Tom Davies (Chapter I, section I.8) East Anglian Cancer Registry (retired) Cambridge, UK Mrs Eva Démaret (Editor) IARC/ENCR Lyon, France Dr Jean Faivre (Chapter I, section I.10) Digestive Cancer Registry Dijon, France Mr Jacques Ferlay (Appendix 1) IARC/ENCR Lyon, France Dr Roger Frost (Chapter I, section I.3, ) Salisbury District Hospital Salisbury, UK Dr Timo Hakulinen (Chapter II) Finnish Cancer Registry Helsinki, Finland Dr John Ironside (Chapter I, section I.7) Department of Pathology, Western General Hospital Edinburgh, Scotland, UK Dr Carmen Martínez García (Chapter I, sections I.2, I.5, I.6) Granada Cancer Registry Granada, Spain Prof. W.M. Molenaar (Chapter I, section I.7) Academisch Ziekenhuis Groningen, The Netherlands Dr Torgil Möller (Chapter I, section I.10) Southern Swedish Cancer Registry (retired) Lund, Sweden Dr Wilhelm Oberaigner (Appendix 2) Tyrol Cancer Registry Innsbruck, Austria Dr Eugenio Paci Tuscany Cancer Registry (Chapter I, section I.9) Florence, Italy Mrs Marjorie Page (Chapter I, section I.8) East Anglian Cancer Registry Cambridge, UK Dr D. Maxwell Parkin (Editor) IARC/ENCR Lyon, France Dr Derek Pheby (Chapter I, sections I.2, I.5, I.6, I.7) South Western Regional Cancer Registry (now University of Bristol) Bristol, UK Dr Eero Pukkala (Appendix 2) Finnish Cancer Registry Helsinki, Finland Dr Milena Sant (Chapter I, section I.7) Lombardy Cancer Registry Milan, Italy Dr Martine Sauvage (Chapter I, sections I.2, I.5, I.6) Registre des Cancers du Tarn Albi, France Dr Leo Schouten (Chapter I, sections I.2, I.5, I.6, I.9) Maastricht Cancer Registry (now Maastricht University) Maastricht, The Netherlands Dr Lorenzo Simonato (Appendix 4) University of Padua Padua, Italy ix Contributors Dr Jenifer Smith (Chapter I, section I.3) Hampshire and Isle of Wight Strategic Health Authority, Southampton, UK Dr Leslie Sobin (Chapter I, section I.10) Armed Forces Institute of Pathology Washington, USA Dr Eva Steliarova-Foucher (Appendix 3) IARC/ENCR Lyon, France Dr Hans H. Storm (Chapter II) Danish Cancer Society Copenhagen, Denmark Dr Lyly Teppo (Chapter I, section I.3) Finnish Cancer Registry (retired) Helsinki, Finland Dr Jerzy E. Tyczynski (Editor) IARC/ENCR Lyon, France Dr Otto Visser (Chapter I, section I.3) Amsterdam Cancer Registry Amsterdam, The Netherlands Dr Hartwig Ziegler (Chapter II) Saarland Cancer Registry Saarbrücken, Germany Acknowledgements The editors are grateful to Dr Risto Sankila, of the Finnish Cancer Registry, Helsinki, Finland, for his valuable contributions to the ENCR Recommendations, and to Dr John Cheney for editing and layout. Introduction The European Network of Cancer Registries (ENCR) project was established in 1989 and is supported by the Cancer Programme of the European Commission (Health and Consumer Protection Directorate-General, DG SANCO). The original objectives of the ENCR were: to improve the quality, comparability and availability of cancer incidence data, to create a basis for monitoring cancer incidence and mortality in the European Union, to provide regular information on the burden of cancer in Europe, to promote the use of cancer registries in cancer control, health-care planning and research. The Network: promotes continuous collaboration between cancer registries, defines data collection standards, provides training for cancer registry personnel, disseminates information on incidence and mortality from cancer in the European Union and elsewhere in Europe. Recently, the Health Monitoring Programme of the Public Health Directorate has established projects (i.e. CaMon and EUROCHIP) which are aimed at monitoring the cancer burden in the European Union. The ENCR member registries are key data providers for such activities. Comparability of the data between registries is therefore an important issue, and harmonizing the registries procedures is one of the main goals of the Network. The number of cancer registries in Europe is continuously growing and creates new challenges to maintain and improve data quality among European registries allowing their use in comparative studies within Europe, and with the rest of the world. ENCR has established several Working Groups, which recommended standard procedures to be implemented by the registries. The year 2002 was the last year for which a programme specifically devoted to the control of cancer was part of the Public Health Programme. This publication summarizes the ENCR achievements in harmonization of registry activities. It brings together all recommendations and guidelines that have been prepared so far by the ENCR Working Groups, as well as recommendations prepared by the International Association of Cancer Registries (IACR) and adapted by the Network. Several other topics, not included in this volume, are currently being studied by Working Groups, or are planned for the future. New guidelines and recommendations will be included in updates to these ENCR Recommendations. The editors have noted that information on on-going ENCR projects could be useful for the registries. Several appendices have been added to the volume containing information about the EUROCIM software and databases, the ACCIS project on childhood cancers, automated registration, and structured registry reviews (audits). The complete address list of the member registries and a list of selected ENCR publications are also included. We hope that this publication will be a useful tool for all the ENCR member registries. The ENCR Secretariat will welcome comments, which could help in preparing subsequent volumes. The Editors xi Chapter I Recommendations on registry practices Section I.1. Minimum data-set No recommendations on the minimum data-set have been made by ENCR. However, in the recommendations with respect to Confidentiality in Population-Based Cancer Registration in the European Union (Chapter II), the Working Group made the following observation: Data items Cancer registries should observe the principles related to data quality (Directive 95/46/EC Article 6) and collect data that are adequate, relevant and not excessive in relation to the purpose, as well as being accurate, complete and up to date. The number of data items should thus be limited for two reasons quality (the fewer data items the greater the likelihood that these will be recorded correctly) and confidentiality (the more data items the more chance of an unintended breach of confidentiality when releasing data). The data items in the recommended minimum data-set for cancer registries are listed in Table 1. Standardized definitions for recording and coding of several of these data items have been prepared. Reference Jensen, O.M., Parkin, D.M., MacLennan, R., Muir, C.S. & Skeet, R.G., eds, Cancer Registration Principles and Methods (IARC Scientific Publications No. 95), Lyon, International Agency for Research on Cancer Table 1. Items of information collected by registries (from Jensen et al., 1991) Essential variables Personal identification Sex Date of birth Address Incidence date Most valid basis of diagnosis Topography (site) of primary Morphology (histology) Behaviour Source of information Recommended variables Date of last contact Status at last contact Stage or extent of disease Initial treatment Names (in full) AND/OR unique personal identification number Male or female Day, month, year Usual residence (coded) At least month and year ICD-O ICD-O ICD-O At least month and year (At least dead or alive) Section I.2. Incidence date The date of the first event (of the six listed below) to occur chronologically should be chosen as incidence date. If an event of higher priority occurs within three months of the date initially chosen, the date of the higher-priority event should take precedence. Order of declining priority: 1. Date of first histological or cytological confirmation of this malignancy (with the exception of histology or cytology at autopsy). This date should be, in the following order: a) date when the specimen was taken (biopsy) b) date of receipt by the pathologist c) date of the pathology report. 1 2 Chapter I 2. Date of admission to the hospital because of this malignancy. 3. When evaluated at an outpatient clinic only: date of first consultation at the outpatient clinic because of this malignancy. 4. Date of diagnosis, other than 1, 2 or 3 5. Date of death, if no information is available other than the fact that the patient has died because of a malignancy. 6. Date of death, if the malignancy is discovered at autopsy. Whichever date is selected, the date of incidence should not be later than the date of the start of the treatment, or decision not to treat, or date of death. The choice of the date of incidence does not determine the coding of the item basis of diagnosis . Section I.3. Basis of diagnosis Registries may choose to record all of the notifications which they receive for a given cancer case (including date, source, and basis of diagnosis). This permits calculations of the number of notifications per case, number of sources per case, and the number of death certificate notifications (DCN). However, for comparison between registries, and as a measure of validity, only the most valid basis of diagnosis is required. The suggested codes are hierarchical, so that the higher number represents the more valid basis, and should thus be used for this purpose. If there is no information on how the diagnosis had been made (information obtained from an automated source, for example) the code 9 (Unknown) should be used. Such cases are excluded from calculations of the percentage of cases diagnosed clinically, microscopically, by death certificate alone, etc. Table 1. Basis of diagnosis codes Code Description Criteria 0 Death certificate only The only information to the registry is from a death certificate. Non-microscopic Microscopic 5 6 Clinical Clinical investigation Specific tumour markers Cytology Histology of a metastasis Diagnosis made before death, but without the benefit of any of the following (2 7) To include all diagnostic techniques, including X-ray, endoscopy, imaging, ultrasound, exploratory surgery (e.g., laparotomy) and autopsy, without a tissue diagnosis. To include biochemical and/or immunological markers which
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