WORLD HEALTH ORGANIZATION INTERNATIONAL AGENCY FOR RESEARCH ON CANCER AND INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES Cancer Registration: Principles and Methods Edited by O.M. Jensen, D.M. Parkin, R. MacLennan, C.S. Muir and R.G. Skeet IARC Scientific Publications No. 95 International Agency for Research on Cancer Lyon, France 1991 Published by the International Agency for Research on Cancer, 150 cours Albert Thomas, 69372 Lyon Cedex 08, France 0International Agency for Research on Cancer, 1991 Distributed by Oxford University Press, Walton Street, Oxford OX2 6DP, UK Distributed in the USA by Oxford University Press, New York All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of the copyright holder. 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. ISBN 92 832 1195 2 ISSN 0300-5085 Printed in the United Kingdom Contents Foreword ....................................................................................................... vii Chapter 1. Introduction K. Shanmugaratnam .................................................................................... Chapter 2. History of cancer registration G. Wagner .................................................................................................. Chapter 3. Purposes and uses of cancer registration 0.M. Jensen and H.H. Storm ..................................................................... Chapter 4. Planning a cancer registry 0.M. Jensen and S. Whelan ........................................................................ Chapter 5. Data sources and reporting J. Powell ..................................................................................................... Chapter 6. Items of patient information which may be collected by registries R. MacLennan ............................................................................................ Chapter 7. Classification and coding of neoplasms C.S. Muir and C. Percy .............................................................................. Chapter 8. Manual and computerized cancer registries R.G. Skeet .................................................................................................. Chapter 9. Quality and quality control R.G. Skeet .................................................................................................. Chapter 10. Reporting of results 0.M. Jensen and H.H. Storm ..................................................................... Chapter 11. Statistical methods for registries P. BoyIe and D.M. Parkin .......................................................................... Chapter 12. Analysis of survival D.M. Parkin and T. HakuIinen ................................................................... Chapter 13. The hospital-based cancer registry J.L. Young .................................................................................................. Chapter 14. Cancer registration in developing countries D.M. Parkin and L.D. Sanghvi ................................................................... Chapter 15. Cancer registration: legal aspects and confidentiality C.S. Muir and E. Dimaret .......................................................................... vi Contents Appendix 1. United Nations Standard Country Codes ............................... Appendix 2. Editing for consistency of data items V. Van Holten ............................................................................................ Appendix 3. (a) The Danish Cancer Registry, a self-reporting national cancer registration system with elements of active data collection H.H. Storm ...................... .............................. .. .. ................ .... .......... (b) The Thames Cancer Registry R.G. Skeet ... .. .. .. .. .. .. .. .. ..... .. .. .. .. .. , .. (c) Cancer registration in Ontario E.A. Clarke, L.D. Marrett and N. Kreiger .... .. ... ... (d) The Department of Health-Rizal Cancer Registry A. V. Luudico and D. Esteban ............ .. ............. .. ................. ...... ........ Appendix 4. CANREG : Cancer registration software for microcomputers M.P. Coleman and C.A. Bieber .. .. .. .. , .. References .. , .. , . .. Index .. Foreword The maintenance of a register of cancer cases serves many purposes; The recording of cases diagnosed and treated in a single hospital has a primarily clinical function, and is a valuable resource for monitoring and evaluating the work of the institution concerned, including the end results achieved. Registries which record the cancer cases arising in a defined population have rather different goals, which can be broadly categorized as assisting in planning and evaluating cancer-control activities for the populations concerned, and providing a data resource for epidemiological studies of cancer causation. This volume is concerned almost entirely with the functions of such population-based cancer registries, although one chapter is devoted to outlining the specialized functions of the hospital registry. The development of population-based cancer registration, particularly over the last 20-25 years, has been marked by increasing standardization of methods and definitions. This process has been greatly facilitated by the foundation of the International Association of Cancer Registries (IACR) in 1966, and this monograph is the result of the close collaboration that has evolved between the Association and the International Agency for Research on Cancer (IARC). The first manual on cancer registration methodology was published as recently as 1976 (WHO Handbook for Standardized Cancer Registries (Hospital Based), WHO Offset Publications No. 25). Two years later IARC and IACR published Cancer Registration and Its Techniques (by MacLennan, R., Muir, C.S., Steinitz, R. & Winkler, A.; IARC Scientific Publications No. 21), which incorporated all of the material from the earlier handbook, but made additions and changes of emphasis appropriate to population- based registries. Twelve years later, much of the work of cancer registries has been revolutionized by the almost universal availability of computers. Electronic storage and processing of data has greatly enhanced the potential for quality control, and analysis of the data collected has become a routine function, rather than solely an annual event. This monograph reflects these changes, and the now obsolete technology, based on manual filing and card indexes is outlined only briefly. The monograph describes the steps involved in planning and operating a population-based registry. Several chapters are devoted to the uses to which cancer registry data may be put, and the methods appropriate for the analysis and presentation of results. Guidance is also provided on appropriate definitions and codes for the variables commonly collected by cancer registries, which includes a section on the classification and coding of neoplasms. It is thus intended that this monograph will replace its predecessors in becoming the standard work of reference on cancer registration methods. L. Tomatis D.B. Thomas Director President IARC IACR vii Chapter 1. Introduction K. Shanmugaratnam Department of Pathology, National University of Singapore, National University Hospital, Lower Kent Ridge Road, Singapore 051 1, Republic of Singapore The cancer registry has a pivotal role in cancer control. Its primary function is the maintenance of a file or register of all cancer cases occurring in a defined population in which the personal particulars of cancer patients and the clinical and pathological characteristics of the cancers, collected continuously and systematically from various data sources, are documented. The registry analyses and interprets such data periodically and provides information on the incidence and characteristics of specific cancers in various segments of the resident population and on temporal variations in incidence. Such information is the primary resource not only for epidemiological research on cancer determinants but also for planning and evaluating health services for the prevention, diagnosis and treatment of the disease. Cancer registries can also be used for monitoring occupational groups and cohorts of individuals exposed to various carcinogens and as a convenient source of subjects for clinical and epidemiological studies. Those based in hospitals have an important supportive role in the care of cancer patients by assisting clinicians in the follow-up of their cases and by providing statistical data on the results of therapy. The value of a cancer registry depends on the quality of its data and the extent to which they are used in research and health services planning. It is obviously important that the registration of cancer cases should be as complete as possible. The operation of some registries has been seriously curtailed by laws or regulations, designed to ensure secrecy of information, that prevent cross-linkage of different data files, including access to the personal identity of deceased persons in death records. In view of the enormous and rapidly increasing burden of cancer on the community,