- Registry of general cancers in Lille and its periphery
Head :
Jéhannin-Ligier Karine
Last update : 04/12/2012 | Version : 1 | ID : 222
| General | |
| Identification | |
| Detailed name | Registry of general cancers in Lille and its periphery |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | 905196 |
| General Aspects | |
| Medical area |
Cancer research |
| Health determinants |
Geography |
| Others (details) | cancers |
| Keywords | descriptive epidemiology; incidence |
| Scientific investigator(s) (Contact) | |
| Name of the director | Jéhannin-Ligier |
| Surname | Karine |
| Address | GRPS - 235 avenue de la Recherche cs 50086 59373 Loos cedex |
| Phone | + 33 (0)3 20 97 94 92 |
| kligier@registrecancers59.fr | |
| Organization | Centre de référence régional en |
| Collaborations | |
| Funding | |
| Funding status |
Mixed |
| Details | InVS, INCA, ARS Nord Pas de Calais, Conseil régional Nord Pas de Calais, Ligue contre le cancer (Nord) |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Centre de référence régional en cancérologie |
| 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. |
Selection of subjects having the required inclusion criteria. Several sources are used to identify cases: - Hospital pathological anatomy laboratories (no participation of private-practicing anatomocytopathologists) - Medical information departments (medicine/surgery/obstetrics departments) - Health Insurance Departments - Private radiotherapy centers - Molecular biology, hematology, cytogenetics laboratories - Registries of cancers in children - Clinical departments - Attending physicians - Multidisciplinary consultation meetings |
| Database objective | |
| Main objective |
Objectives of the registry in terms of public health (surveillance, evaluation) - Produce local statistics for institutions, particularly decision-makers, researchers, associations and the general public, for describing the trends over time of the incidence of cancers and their geographical distribution - with a view to planning and monitoring the efficacy of treatment (prevalence, survival), for the investigation of clusters. - Participate in producing national, regional (Francim) and international (IARC) statistics on cancer: incidence, prevalence and survival. - Evaluate the impact of public health measures (organized screening programs, regional health programs). Objectives of the registry in terms of research - Evaluate medical practices and patient treatment through specific studies conducted from exhaustive and non-biased data produced by the registry (high- resolution studies). - Develop etiological studies, particularly on professional and environmental determining factors of cancer. - Develop studies on the socioeconomic and clinical determining factors of the treatment and survival of cancer patients. |
| Inclusion criteria |
Tumors diagnosed from January 1st 2005 in adults over the age of 15, living in the area around Lille: - invasive cancers except hematological tumors (except lymphomas included) - in situ of the colon-rectum, breast, cervix, melanoma, thyroid - borderline tumors of the ovaries - benign tumors or tumors of unpredictable progression for tumors of the bladder and central nervous system, Tumors diagnosed from January 1st 2006: extended to children under the age of 15 and to hematological malignancies |
| 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 |
Local |
| French regions covered by the database |
Nord - Pas-de-Calais Picardie |
| Detail of the geography area | Zone of use: area around Lille |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2005 |
| Date of last collection (YYYY or MM/YYYY) | 2008 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | environ 4000 cas incidents de cancers par an selon la définition de patients retenue. Le nombre de cas par sexe et topographie de cancer est disponible sur le site Internet du registre : www.registrecancers59.fr Around 4,000 incident cases of cancer per year according to the selected definition of patients. The number of cases per gender and topography of cancer is available on the registry's website: www.registrecancers59.fr |
| Data | |
| Database activity |
Current data collection |
| 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 collection: - Automated extraction of anatomocytopathology reports from anatomocytopathology laboratories - Extraction from PMSI hospital databases - Extraction from health insurance databases - Data transfer by encrypted files - Consultation of medical records by registry enquirers |
| Participant monitoring |
Yes |
| Details on monitoring of participants | - Vital status, death, date of last news - Sample-based active follow-up is carried out (High-Resolution Francim surveys). - Passive follow-up is carried out using information from the Registry |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | PMSI, ALD (accord cnil) |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.registrecancers59.fr |
| Link to the document | http://www.registrecancers59.fr/index.php?option |
| 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. Local documents can be downloaded on the registry's website. The data recorded in the Registry may be used for specific research. A charter defining the cooperation procedure can be downloaded on the registry's website. |
| Access to aggregated data |
Free access |
| Access to individual data |
Access on specific project only |
