- Registry of general cancers in Lille and its periphery

Head :
Jéhannin-Ligier Karine

Last update : 04/12/2012 | Version : 1 | ID : 222

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Métadonnées
Identification
General Aspects
Scientific investigator(s) (Contact)
Collaborations
Funding
Governance of the database
Additional contact
Type of database
Database objective
Population type
Dates
Size of the database
Data
Procedures
Promotion
Access
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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
Email 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

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