- Bas-Rhin Cancer Registry (Certified Registry)
Head :
Velten Michel, Laboratoire d’Épidémiologie et de santé publique
Last update : 07/08/2015 | Version : 1 | ID : 215
| General | |
| Identification | |
| Detailed name | Bas-Rhin Cancer Registry (Certified Registry) |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL 998044. |
| General Aspects | |
| Medical area |
Cancer research |
| Keywords | tool, epidemiological research, assessment, morbidity, mortality, incidence, prevalence, survival |
| Scientific investigator(s) (Contact) | |
| Name of the director | Velten |
| Surname | Michel |
| Address | Faculté de Médecine 11, rue Humann 67085 STRASBOURG CEDEX |
| Phone | + 33 (0)3 90 24 31 91 |
| michel.velten@unistra.fr | |
| Unit | Laboratoire d’Épidémiologie et de santé publique |
| Organization | Faculté de Médecine |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Details | European Network of Cancer Registries (ENCR), International Association of Cancer Registries (IACR) and compliance with operating rules established by the International Agency for Research on Cancer (IARC). French Network of Cancer Registries (FRANCIM Network) and collaboration with the French Institute for Public Health Surveillance (InVS) and National Cancer Institute (INCA), as part of the national cancer surveillance programme. |
| Funding | |
| Funding status |
Public |
| Details | InVS |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Faculté de Médecine Starsbourg |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Morbidity registers |
| Additional information regarding sample selection. | Selection of subjects meeting the required inclusion criteria. Several sources were used: - Anatomical pathology laboratories - university hospital centre - CLCC - European cancer treatment centres - hospital - private clinics - health insurance fund. |
| Database objective | |
| Main objective |
- Registry objectives regarding public health:
The registry was created in 1974 with two main aims: 1. To create a useful tool for epidemiological research and evaluation, modelled on tools established in various other countries; 2. To verify morbidity data of the unfavourable situation in Alsace with regards to high cancer mortality. The Bas-Rhin cancer registry is responsible for estimating cancer incidence, prevalence and survival. The registry also aims to participate in national and international studies in these areas: comparing incidence rates to locate different geographical regions and compare them in a database; to develop existing work to identify factors that explain variations in cancer incidence, prevalence and survival. The cancer registry is also a tool for assessing the effectiveness of preventive measures, especially screening campaigns throughout the département for breast cancer since 1989, cervical and colon cancer since 1994 and colon and rectal cancer since 2008. As such, the trend in incidence rate can be monitored and the proportion of false negatives can be documented. - Registry research objectives: The registry is developing research in the field of estimating cancer incidence in geographical areas with no registry, as well as estimating survival through relative survival and healing models in order to obtain the best "current" survival estimates. |
| Inclusion criteria | All diagnosed malignant or primitive in situ tumours are registered for subjects residing in the Bas-Rhin département at the time of diagnosis, regardless of their treatment location. Benign and intermediate malignant tumours in the bladder and central nervous system are also registered. Basocellular skin tumours are excluded. Multiple tumours in the same subject are registered, regardless if they occur simultaneously in paired organs or sub-locations of the same organ. |
| 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 | Bas-Rhin département (67). |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 1975 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1975-2004: 122,617 reported cases. |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Administrative data |
| Clinical data (detail) |
Direct physical measures |
| Administrative data (detail) | Identification data. |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Consultation of files or clinical records on-site or electronically. |
| Participant monitoring |
Yes |
| Details on monitoring of participants | - Vital status - a sample follow-up is carried out. Organised as part of the "high resolution" studies conducted by the FRANCIM network, where the objective is to study the development of cases (recurrence, metastases, complications) and treatment based on one or two large anatomical localisations per year with an average rotation period of five years. |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | PMSI |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed?term |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Contact the scientist in charge. |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
