- Doubs and Territoire de Belfort primitive malignant tumors register
Head :
Woronoff Anne-Sophie
Last update : 04/03/2012 | Version : 1 | ID : 210
| General | |
| Identification | |
| Detailed name | Doubs and Territoire de Belfort primitive malignant tumors register |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | 903417 |
| General Aspects | |
| Medical area |
Cancer research |
| Others (details) | cancer |
| Keywords | tumor, collection, cancer diagnoses, cancer risk, surveys |
| Scientific investigator(s) (Contact) | |
| Name of the director | Woronoff |
| Surname | Anne-Sophie |
| Address | CHU Saint-Jacques 2 place Saint-Jacques - 25030 Besançon cedex |
| Phone | 03 81 21 83 12 |
| asworonoff@chu-besancon.fr | |
| Organization | Registre des tumeurs du Doubs et du Territoire de |
| Collaborations | |
| Funding | |
| Funding status |
Public |
| Details | Le registre est financé par l'InVS, l'INCa, le CHU de Besançon et l'ARS de Franche-Comté. D'autres financements ponctuels interviennent sur projets (Ligue contre le cancer ...). |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | CHU de Besançon |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Database recruitment is carried out by an intermediary |
A selection of health institutions and services |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. |
Selection of subjects having the required inclusion criteria. Several sources are used: - Anatomopathology laboratories - Hematological cytology laboratories - Genetic departments of training hospitals - Medical information departments - Health Insurance Funds - Private-practicing and hospital clinicians (+ GPs when necessary) - Summaries of Multidisciplinary Consultation Meetings (RCPs) - Organized screening structure - Haut-Rhin and Bas-Rhin Registry - National Registry of Hematological Diseases in children - Registry of Solid Tumors in children |
| Database objective | |
| Main objective |
The registry carries out a continuous and exhaustive collection of all new cancer diagnoses in the general population living in a given département. It has the twofold objective of describing and monitoring the cancer risk and conducting research from the analysis of data gathered or specific surveys. Objectives of the Registry in terms of public health: - Participate in the epidemiological surveillance of cancers at local and national level under the Francim network by publishing incidence indicators by cancer location, gender, age and year of diagnosis. - Help to evaluate primary and secondary prevention initiatives (organized cancer screening), patient treatment and healthcare needs in the general population. |
| Inclusion criteria | All primitive malignant tumors diagnosed in patients living, at the time of diagnosis, in the Doubs or Territoire-de-Belfort départements, irrespective of where they are treated, are recorded - including stratum basale skin carcinomas (specific to the Doubs Registry). In situ primitive tumors of the breast, colon-rectum, cervix, bladder and excretory ducts, as well as in situ melanomas. Benign tumors and tumors of intermediate malignancy of the central nervous system and bladder are also recorded, as are borderline tumors of the ovary. |
| Population type | |
| Age |
Newborns (birth to 28 days) Infant (28 days to 2 years) Early childhood (2 to 5 years) Childhood (6 to 13 years) Adolescence (13 to 18 years) Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) Elderly (65 to 79 years) Great age (80 years and more) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
Departmental |
| French regions covered by the database |
Bourgogne Franche-Comté |
| Detail of the geography area | Doubs (25) and Territoire de Belfort (90) |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 1978 |
| Date of last collection (YYYY or MM/YYYY) | 2008 |
| Size of the database | |
| Size of the database (number of individuals) |
Greater than 20 000 individuals |
| Details of the number of individuals | 1978-2008: 79100 / Doubs 2007-2008: 2312 / Territoire de Belfort |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Paraclinical data Biological data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Paraclinical data (detail) | Any additional examination providing information for tumor coding |
| Biological data (detail) | Any additional examination providing information for tumor coding |
| Administrative data (detail) | Identification data (Last name, first name, date of birth, town of birth, address) |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Active or passive collection (CNIL authorization): - Receipt of anatomopathological and cytolo-hematological reports, lists of hospital stays (PMSI) and chronic disease diagnoses with regard to health insurance reimbursement. Lists by encrypted electronic dispatch. - Active search for regular complementary information in medical records |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Vital status, death, date of last news - Sample-based follow-up is carried out (High-Resolution Francim surveys). - Passive follow-up is carried out using information from the Registry (anatomocytopathology reports). |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | PMSI, Chronic disease lists, Organized screening structure (CNIL authorization) |
| Promotion and access | |
| Promotion | |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) |
Incidence data is available in aggregate form, by cancer location, year, gender and age. This data is published at regular intervals at local and national level (see ""Find out more""). The data recorded in the Registry may be used for specific research. Project requests are analyzed by the Registry's Strategic and Scientific Advisory Board. The arrangements for cooperation must be defined. |
| Access to aggregated data |
Free access |
| Access to individual data |
Access on specific project only |
