RNTSE - French National Registry of Childhood Solid Tumors (certified registry)

Head :
Lacour Brigitte, Registre National des Tumeurs Solides de l'Enfant

Last update : 07/02/2015 | Version : 2 | ID : 64

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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 French National Registry of Childhood Solid Tumors (certified registry)
Sign or acronym RNTSE
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation 900183
General Aspects
Medical area Cancer research
Health determinants Geography
Keywords childadolescent
Scientific investigator(s) (Contact)
Name of the director Lacour
Surname Brigitte
Address Faculté de Médecine, 9 rue de la Forêt de la Haye, 54500 Vandoeuvre les Nancy
Phone 0383683861
Professional email or generic email brigitte.lacour@medecine.uhp-nancy.fr
Unit Registre National des Tumeurs Solides de l'Enfant
Organization CHU
Collaborations
Funding
Funding status Public
Details - Institut national de veille sanitaire (InVS)- Institut national du cancer (INCa)
Governance of the database
Sponsor(s) or organisation(s) responsible CHU Nancy
Organisation status Public
Sponsor(s) or organisation(s) responsible ARECEA (Association pour la Recherche en Epidémiologie des Cancers de l'Enfant et de l'Adolescent)
Organisation status Private
Additional contact
Main features
Type of database
Type of database Morbidity registers
Additional information regarding sample selection. Selection of subjects having the required inclusion criteria.
Database objective
Main objective Objectives in terms of public health (surveillance, evaluation):
1) Produce national reference rates on the incidence of solid tumors in children and on their histological distribution and monitor the geographical and temporal variations of this.
2) Provide the survival rates for the various cancers in the general population, all treatments taken as a whole and monitor the geographical and temporal variations in this.
3) Describe the care sectors followed by children, from the first symptoms to the treatment, and the methods for care as well as its determinants. Collaborate with clinicians of the French Society for the fight against Cancers in Childhood and Adolescent Cancers (SFCE) on the setting up of long-term follow-up of cohorts of children with cancer.

Objectives in terms of research:
Conduct and associate ecological studies and case/control studies concerning the risks of cancer associated with environmental exposure, population movements, the way of life and early conditions of exposure to common infections, genetic factors interacting or not interacting with the environmental factors (the etiologic research work is particularly developed by UMRS-1018 Team 6 of Inserm).
Inclusion criteria The following are included:
All solid tumors in children defined in the International Classification of Childhood Cancers (ICCC) and belonging to the diagnostic groups III to XII, as well as the ""borderline"" tumors and certain benign tumors.
Appearing starting on January 1, 2000 in a child under the age of 15 years on the date of the first sure diagnostic, and for whom the usual domicile is located in metropolitan France.
Starting on January 1, 2011, extension of the recording up to the age of 18 years for all the cases domiciled in metropolitan France and in an Overseas Département (Guadeloupe, French Guiana, Martinique, Reunion)
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)
Population covered Sick population
Gender Male
Woman
Geography area National
Detail of the geography area Metropolitan France (+ DOM since 01/01/2011)
Data collection
Dates
Date of first collection (YYYY or MM/YYYY) 2000
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 2003: 1045 cases 2004: 1031 cases 2005: 1012 cases2006: 1025 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 (Last name, First name, Maiden name of the mother, Date of birth, Commune of birth, Insee Code, Commune of residency for the diagnostic, Insee Code, Full address of the diagnostic, Sex)
Presence of a biobank No
Health parameters studied Health event/morbidity
Health care consumption and services
Care consumption (detail) Hospitalization
Medical/paramedical consultation
Medicines consumption
Procedures
Data collection method Active collection in the hospital departments by survey takers
Classifications used ICD-O 3 and grouped according to ICCC
Participant monitoring Yes
Details on monitoring of participants Vital status Project to collect the serious health events during follow-up by crossing the data with the data of the SNIIR-AM (not yet operational)
Links to administrative sources No
Promotion and access
Promotion
Link to the document http://www.chu-nancy.fr/rntse/
Link to the document http://www.hal.inserm.fr/RNTSE
Description List of publications in HAL
Link to the document http://www.ncbi.nlm.nih.gov/pubmed/?term=NRCST[title%2Fabstract]+OR+%28%28NRCH[title%2Fabstract]+OR+Escale+OR+Estelle%29+AND+Clavel[author]%29+OR+geocap+OR+mobi-kids+OR+%22Childhood+Leukemia+International+Consortium%22
Description List of publications in Pubmed
Access
Terms of data access (charter for data provision, format of data, availability delay) Website: http://www.chu-nancy.fr/rntse/
Annual activity report intended for InVS and Inserm.
Integration in the ""The cancer situation in France"" report published every year by INCa
Publications in specialized reviews
Communication at scientific congresses
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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