Cancer Registration: Principles and Methods - IARC

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Appendix 3 (a) The Danish Cancer Registry, a self-reporting national cancer registration system with elements of active data collection Introduction Denmark and its health service Hans H. Storm Danish Cancer Registry, Danish Cancer Society, Rosenvaengets Hovedvej 35, PO Box 839, Copenhagen, Denmark The kingdom of Denmark (excluding Greenland and the Faeroe isles) covers 43 080 square kilometres between 55 and 58 degrees north and 8 and 12.5 degrees east. The population on 1 January 1986 was 5.1 million. The medical care system is organized into a private sector of general practitioners and specialists under contract with the National Health Insurance, and a public sector operating hospitals under the authority of the counties, communities or the Danish State. Health care is provided free to all inhabitants. In 1980, there were 5.6 hospital beds and 2.2 physicians per 1000 inhabitants. Surgical treatment of cancer is carried out both at general and at oncological centres. The hospital departments are serviced by 28 institutes of pathology. Non-surgical cancer treatment is partially centralized at five regional radiotherapy and oncological centres. Almost everyone in the population is able to reach one of the regional cancer ccntres'within a few hours. The Danish Cancer Registry mission The Danish Cancer Registry was founded in May 1942 as a nationwide programme to register all cancer cases in the Danish population. It is operated by the Danish Cancer Society on behalf-of the National Board of Health and is supported by the Danish Medical Association. Incidence figures are available from 1 January 1943. The original mission of the Cancer Registry (Clemmesen, 1965) was to collect material that could serve as the basis for: (a) 'reliable morbidity statistics with the aim of obtaining accurate estimates of therapeutic results in cancer; (b) an accurate estimate of differences in incidence of malignant diseases at, various times and between various areas, occupations etc;
Appendix 3(a) 221 (c) statistics on individual patients for the use of physicians as well as for the study of multiple cancer, coincidence of cancers etc. The Registry produces morbidity statistics with a view to monitoring .the variation in the incidence of cancer over time, geographical location, occupation and other factors. It also conducts epidemiological research within the field of cancer causation and prevention. Basis of incidence The Registry is tumour-based, and tumours (with some exceptions, i.e. multiple cancers of skin and paired organs with similar morphological characteristics), are the unit registered. For the first 25 years of operation, the key identifiers linking tumour records for a person were date of birth and name. Since 1968, registration has been facilitated by the introduction of a unique personal identifying number (PNR) which is now used as the key-identifier. This identification number facilitates internal linkages to avoid duplicate registrations. Reporting Legal aspects Until March 1987, reporting was voluntary and a small token fee was paid for each notification form received. On 1 March 1987, reporting became mandatory (Sundhedsstyrelsen, 1987), without otherwise changing the reporting system in operation since 1943. Legally, the responsibility for reporting to the Registry lies with the heads of clinical hospital departments, the heads of pathology departments performing post-mortem or practising physicians undertaking treatment or followup, without referring patients to hospital. Reportable diseases and reporting All malignant neoplasms, including carcinomas, sarcomas, leukaemias, lymphomas and all brain and central nervous system tumours, all bladder tumours irrespective of behaviour, and all precancerous lesions on the cervix uteri must be reported to the Cancer Registry. Other precancerous lesions are not reportable. The reportable diseases correspond to the following categories of the ICD-8 classification (the classification currently in use by the Danish National Health Authorities): ICD-8 140-207, 223, 225, 230-239. The rules for notification state that all newly diagnosed cases of reportable diseases must be notified, and that a separate report must be submitted to the Registry for each primary tumour if a patient has multiple primaries. The following must also be notified : -all revisions of diagnosis for a previously reported case; -progression of dysplasia;
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WORLD HEALTH ORGANIZATION INTERNATI
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Contents Foreword .................
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Foreword The maintenance of a regis
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2 Introduction and an increased exp
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4 G. Wagner the first time to elimi
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6 G. Wagner International Symposium
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8 0. M. Jensen and H.H. Storm made
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k d Table 2. Worldwide variation in
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O.M. Jensen and H.H. Storm Hodgkin
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O.M. Jensen and H.H. Storm ~i~ure 2
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16 O.M. Jensen and H.H. Storm 1oo.0
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0. M. Jensen and H. H. Storm Figure
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O.M. Jensen and H.H. Storm -44 year
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Chapter 4. Planning a cancer regist
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24 0. M. Jensen and S. Whelan parti
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26 0. M. Jensen and S. Whelan Numbe
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28 0. M. Jensen and S. Whelan Concl
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30 J. Powell sources, firstly, to p
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32 J. Powell reports. If a histolog
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34 J. Powell needs but conserving t
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36 J. Powell Health insurance (work
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38 J. Powell episodes-that is, with
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The disadvantages are : - the quali
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42 J. Powell (c) medical doctors in
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44 R. MacLennan Table 1. Basic info
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codes (population groups, occupatio
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48 R. MacLennan morphology (item 21
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50 R. MacLennan or convention to th
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facilities and to the acceptance of
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54 R . MacLennan second generation
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56 R. MacLennan Item 18 : Certainty
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2. Carcinoma in situ Intraepithelia
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code allocated as item 20 should re
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Hospital registries will wish to el
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Chapter 7. Classification and codin
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66 C.S. Muir and C. Percy Primarily
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68 C.S. Muir and C. Percy obtained
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70 C.S. Muir and C. Percy Topograph
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Table 2. Coding of selected cancers
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CIassification and coding of neopla
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CIassiJication and coding of neopla
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ClassiJication and coding of neopla
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Class$cation and coding of neoplasm
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Manual and computerized cancer regi
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New notification I Manual and compu
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Disk storage Manual and computerize
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Chapter 9. Quality and quality cont
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Quality and quality control 103 It
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Consistency checks Quality and qual
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Standards Quality and quality contr
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0. M. Jensen and H. H. Storm 109 th
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Reporting of results 111 Evaluation
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Reporting of results 113 should giv
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171 Connective tiaaue 1 3 5 11 10 1
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- 0 - 0 - m o m m L O N I O I O O o
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Reporting of results Number of case
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Reporting of results Figure 5. Age-
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Reporting of results Dlgestlve orga
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Reporting of results Year of diagno
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Statistical methods for registries
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Chapter 12. Analysis of survival D.
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Passive follow-up Analysis of survi
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Analysis of survival Table 1 - cont
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Table 2. Calculation of observed su
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Table 3. Calculation of the correct
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Page 177 and 178: Analysis of survival 171 In the cal
Page 179 and 180: Analysis of survival 1 73 Table 6.
Page 181 and 182: Analysis of survival Deaths : cases
Page 183 and 184: Chapter 13. The hospital-based canc
Page 185 and 186: The hospital-based cancer registry
Page 191 and 192: Chapter 14. Cancer registration in
Page 193 and 194: Cancer registration in developing c
Page 205 and 206: Chapter 15. Cancer registration: le
Page 207 and 208: Cancer registration: legal aspects
Page 209 and 210: Computer Cancer registration : lega
Page 211 and 212: Cancer registration: legal aspects
Page 213 and 214: Cancer registration : legal aspects
Page 215 and 216: Appendix I Botswana Brazil British
Page 217 and 218: Appendix 1 Sri Lanka Sudan Suriname
Page 219 and 220: Appendix 2 213 Some of these edits
Page 221 and 222: Appendix 2 Table 1 - continued (Not
Page 223 and 224: Table 2. Example of a SEER site/his
Page 225: - Appendix 2 219 Follow-up status (
Page 229 and 230: Appendix 3(a) 223 presence of tumou
Page 231 and 232: Appendix 3(a) the hospital record.
Page 233 and 234: Appendix 3(a) 227 REVERSE SIDE OF N
Page 235 and 236: Appendix 3(a) REVERSE SIDE OF NOTIF
Page 237 and 238: Data from CPR, i.e. vital Warning o
Page 239 and 240: Appendix 3(a) 233 place of residenc
Page 241 and 242: Appendix 3(a) 235 maintained for ta
Page 243 and 244: Appendix 3 (b) The Thames Cancer Re
Page 245 and 246: SURGERY Appendix 3(b) TREATMENT OF
Page 247 and 248: Appendix 3(b) 241 supervised by the
Page 249 and 250: Appendix 3(b) 243 first for direct
Page 251 and 252: Appendix 3(b) 245 maintaining an ef
Page 253 and 254: Appendix 3(c) 247 information on ca
Page 255 and 256: Appendix 3(c) 249 Pathology reports
Page 257 and 258: Appendix 3(c) HOSPITAL DISCHARGES L
Page 259 and 260: Appendix 3(c) Table 1. Groupings of
Page 261 and 262: Appendix 3(c) 255 several sources a
Page 263 and 264: Appendix 3(c) 257 resulted in a can
Page 265 and 266: Appendix 3(d) medical records (in-p
Page 267 and 268: Appendix 3(d) MOST VALID BASIS OF D
Page 269 and 270: Appendix 3(d) 263 -malignancies usu
Page 271 and 272: Appendix 3(d) abstract. For recorde
Page 273 and 274: Appendix 4. CANREG: Cancer registra
Page 275 and 276: Appendix 4 Table 1. CANREG internal
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Appendix 4 271 0 Page 1 Patient Nam
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Appendix 4 273 -an operating system
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References Acheson, E. D. (1967) Me
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References 277 oncology services. T
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References International Agency for
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References 281 Official Statistics
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References 283 Sieveking, G. H. (19
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Subject Index Access to data, 202,
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Subject Index International Classif
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