ARER 68 - HAUT-RHIN CANCER REGISTRY
Head :
Marrer Emilie
Last update : 06/28/2014 | Version : 1 | ID : 4865
| General | |
| Identification | |
| Detailed name | HAUT-RHIN CANCER REGISTRY |
| Sign or acronym | ARER 68 |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | 999344 |
| General Aspects | |
| Medical area |
Cancer research |
| Health determinants |
Addictions Climate Genetic Geography Iatrogenic Intoxication Nutrition Occupation Pollution Social and psychosocial factors |
| Others (details) | Cancers |
| Keywords | Cancer, incidence |
| Scientific investigator(s) (Contact) | |
| Name of the director | Marrer |
| Surname | Emilie |
| Address | Centre hospitalier de Mulhouse ARER 68 87, avenue d’Altkirch – BP 1070 |
| Phone | + 33 (0)3 89 64 62 51 |
| emilie.marrer@ch-mulhouse.fr | |
| Organization | Centre hospitalier de |
| Collaborations | |
| Funding | |
| Funding status |
Mixed |
| Details | INCa (Institut National Du Cancer), INVS (Institut de veille sanitaire), Conseil général du Haut-Rhin, Comité départemental du Haut-Rhin de la Ligue contre le cancer, Ville de Mulhouse, Ville de Colmar. |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Association pour la recherche épidémiologique par les registres dans le Haut-Rhin (ARER 68) |
| Organisation status |
Private |
| 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. | Comprehensive collection of new cases. Sources first explored are referred to as primary sources. These sources allow the identification of cases. Foremost among these primary sources are services, offices or laboratories dedicated to pathological anatomy and cytology, public or independent practitioners, from the département, from neighbouring départements and certain sites specifically dedicated to cancerous pathology. Other primary sources are represented by radiography, oncology or paediatric services, haematology laboratories, health examination clinics and medical archive services. Medical information departments and healthcare institutions are progressively becoming an important primary resource since 1995. Data collected are systematically checked, supplemented or modified from secondary sources, either directly on site or by written request. Principally concerning public and private sector hospital services, as well as independent, general or specialist treating physicians from or outside the département. |
| Database objective | |
| Main objective | To identify all new cancer cases occurring among Haut-Rhin inhabitants, including those diagnosed and treated elsewhere. |
| Inclusion criteria | The Haut-Rhin cancer registry includes all patients with a tumour that meet the criteria outlined below and who are residing in Haut-Rhin at the time of diagnosis. Tumours included: - malignant and invasive tumours during first identification of primary site or, alternatively, during identification of unknown primary site with metastases (the primary site declared as "uncertain" in this case), - benign intracranial tumours since 1991 are also recorded:- baso-cellular skin carcinoma, - non-invasive in situ or intraepithelial malignant tumours, no previous appearance of invasive tumour of the same histological type and site for the same subject, - non-invasive bladder tumours. However, calculations do not take into account the incidence of invasive malignancies. To compare data with registries that do not collect baso-cellular skin carcinomas, the incidence of double presentation of invasive skin tumours: excluding baso-cellular skin carcinoma and, separately, with baso-cellular skin carcinoma. |
| 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 |
Alsace Champagne-Ardenne Lorraine |
| Detail of the geography area | Haut-Rhin |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 1982 |
| Date of last collection (YYYY or MM/YYYY) | 2010 |
| Size of the database | |
| Size of the database (number of individuals) |
Greater than 20 000 individuals |
| Details of the number of individuals | 110 000 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Administrative data (detail) | Identity, age and address at time of diagnosis |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity |
| Procedures | |
| Data collection method | Cases are identified by epidemiological record which includes: date of onset of cancer, anatomical site, histological type, diagnosis conditions, initial assessment of extension, the existence of a known prior cancer, identification of site of diagnosis, information sources, vital status information. |
| Classifications used | CIM-0-3, CIM-10 |
| Participant monitoring |
No |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Publications. Access conditions to be defined |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
