General French Cancer Registries The example of the Cancer Registry of Doubs and Belfort Territory

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1 General French Cancer Registries The example of the Cancer Registry of Doubs and Belfort Territory Dr Anne-Sophie Woronoff Cancer Registry Doubs and Belfort Territory, France Workshop Besançon June 29 th 2012

2 Population-based versushospital-based A Population-based registry records all new cases in a defined population: Continuous and completeness records of nominative data concern one or more health event in a defined population (geographical area) for epidemiologic and public health research by a team with appropriate skills A Hospital-based registry records all cases in a given hospital(without knowledge of the background population) -> selective and biased sample of the patient population 2

3 Purpose and uses of cancer registration Cancer registry: a pivotal role in cancer control An important role in planning and managing cancer control activities prevention, early detection, treatment Needed knowledge about national and local cancer patterns and trends 3

4 Finistère dig 1984 Basse Normandie Hémopathie 2004 Manche 1994 Loire-Atlantique- Vendée 1999 Limousin 1998 Gironde 2004 Gironde Hémopathie 2002 Gironde SNC 1999 Somme 1982 Calvados 1978 Calvados dig 1978 Lille et sa zone de proximité 2005 Marne-Ardennes Thyroïde 1975 Bas-Rhin 1975 Haut-Rhin 1988 T de Belfort 2005 Doubs 1977 Bourgogne dig 1976 Cote d Or Hémopathie 1980 Cote d Or Gynécologie 1982 Isère 1977 Hérault 1983 Tarn R généraux 2 registres nationaux : - Registre des hémopathies malignes de l enfant 10 R Spécialisés - Registre des tumeurs solides de l enfant 1 registre multicentrique à vocation nationale : mesonat Registres outre mer

5 Finistère dig 1984 Basse Normandie Hémopathie 2004 Manche 1994 Loire-Atlantique- Vendée 1999 Limousin 1998 Gironde 2004 Gironde Hémopathie 2002 Gironde SNC 1999 Somme 1982 Calvados 1978 Calvados dig 1978 Lille et sa zone de proximité 2005 Marne-Ardennes Thyroïde 1975 Bas-Rhin 1975 Haut-Rhin 1988 T de Belfort 2005 Doubs 1977 Bourgogne dig 1976 Cote d Or Hémopathie 1980 Cote d Or Gynécologie 1982 Isère 1977 Hérault 1983 Tarn R généraux 2 registres nationaux : - Registre des hémopathies malignes de l enfant 10 R Spécialisés - Registre des tumeurs solides de l enfant 1 registre multicentrique à vocation nationale : mesonat Registres outre mer

6 Doubs & Belfort Territory Registry General Registry: all cancers, all ages Collection based on the département of residence (wherever the patient was born, or is treated for his/her cancer) One of the oldest French registries Started in 1977 in the Doubs département Extended in 2007 to Belfort Territory Database: 30 years of incidence 92,300 tumors - 81,000 individuals 4,200 new cancer cases / year (Doubs and Belfort T.) 6

7 Doubs & Belfort Territory Registry Inclusion criteria Malignant neoplasms (/3), spino-cellular carcinomas Carcinomas in situ or intraepithelial carcinomas Breast, since 1997 Uterus cervix, since 1993 Colon and rectum, since 2003 Skin Melanoma (/2) Non-invasive tumors and benign tumors Bladder, since 1978 SNC, since 2003 (/0,/1,/2) Borderline tumors (/1) for Ovary Baso-cellular skin carcinoma: a Doubs Registry specificity (with Haut-Rhin Registry) 7

8 The team Registration team Collect information (medical and administrative) Classify information (national training TSEECC) Registry data Research team Specific collect information Studies Statistician/Epidemiologist Management of the database Provide Indicators Analyses 8

9 Registrymanagementdepends on the information that it can collect from the data sources for: Identifying the cases Recording data Reporting methods Passive reporting: files with lists of cancer patients Active reporting (collection at source): registry personnel visiting the sources of data, abstracting the required information: Consultation of medical files 9

10 Data sources Pathology laboratories Health insurance Hematology laboratories REGISTRY Hospitals Active reporting Passive reporting Specializedcancer hospitals Private Hospitals Mortality data (CépiDC-Inserm) Physicians Screening programs RegionalNetwork for cancer management

11 Data sources Passive reporting: files lists of cancer patients/cross the data Pathology laboratories Health insurance Hematology laboratories REGISTRY Hospitals Specializedcancer hospitals Private Hospitals Mortality data (CépiDC-Inserm) Physicians Screening programs RegionalNetwork for cancer management

12 Data sources Passive reporting: files lists of cancer patients/cross the data Pathology laboratories Health insurance Hematology laboratories REGISTRY Hospitals Specializedcancer hospitals Private Hospitals Mortality data (CépiDC-Inserm) Physicians Screening programs RegionalNetwork for cancer management

13 Data sources Active reporting : visiting the data sources, collect information from medical files Passive reporting: files lists of cancer patients/cross the data Pathology laboratories Health insurance Hematology laboratories REGISTRY Hospitals Specializedcancer hospitals Private Hospitals Mortality data (CépiDC-Inserm) Physicians Screening programs RegionalNetwork for cancer management

14 Data sources Active reporting : consulting the data sources, collect information from medical files Passive reporting: files lists of cancer patients/cross the data Pathology laboratories Health insurance Hematology laboratories REGISTRY Hospitals Specializedcancer hospitals Private Hospitals Mortality data (CépiDC-Inserm) Physicians Screening programs RegionalNetwork for cancer management

15 Data sources Passive reporting: files lists of cancer patients/cross the data Pathology laboratories Health insurance Hematology laboratories REGISTRY Hospitals Specializedcancer hospitals Private Hospitals Mortality data (CépiDC-Inserm) Physicians Screening programs RegionalNetwork for cancer management

16 16

17 Legal aspects in France Registries must guarantee, for all individuals recorded in the registry s database, that it ensures the preservation of anonymity of the subjects data CNIL: National commission for informatics and liberty Deliberation n of Nov 27 th, 2003 CNIL: «recommendation for treatments of personal data by cancer registries» Authorization to give nominative data to registries (professional secrecy) Registries must set up confidentiality policy for the registered data Registries have to watch the safety of the data at the level of premises and access to computer s system, and to release the full process in written procedures 17

18 Storage Qualityof the information collected rather than quantity Limited number of data items for 2 reasons: Quality Confidentiality Guidelines International Classification of Diseases for Oncology (ICD-O3, TNM) Francim Network ENCR Working Groups 18

19 Basic items to collect Neither too much, nor too little! Relevant data for the purpose Quality data: accurate, complete and upto-date Compulsory variables Recommended variables 19

20 Storage Compulsory variables The person Personal identification (Names / personal identification number) Sex (male, female) Date of birth (day, month, year) Place of birth (coded) Address (usual residence coded at the time of diagnosis) The tumor Incidence date (at least month of the year) Most valid basis of diagnosis Topography of primary tumor /Anatomical location (ICD-O3) Morphology / Histology (ICD-O3) Behavior (ICD-O3 : malignant, benign, in situ and uncertain) 20

21 Storage Recommended variables Date of last contact: day, month, year Status of last contact: at least dead or alive Stage: pretreatment extent of disease (TNM classification system); clinical and/or surgicalpathological staging Grade: degree of tumor differentiation Method of first detection (screening programs) Initial treatment 21

22 Dedicated Software 22

23 Dedicated Software 23

24 Dedicated Software 24

25 Dedicated Software 25

26 In conclusion A rigorous system With Quality procedures To ensure a record of valid data For a reliable scientific exploitation, at the national and international levels For providing sound indicators to regional public health authorities and various stakeholders (associations of patients, physicians, surgeons, pathologists, hospital administrations ) 26

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