RNHE - National register of des pediatric hematological malignancies

Head :
Clavel Jacqueline, UMRS-1018 Equipe 6, INSERM, Université Paris-Sud

Last update : 07/02/2015 | Version : 2 | ID : 61


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General Aspects
Scientific investigator(s) (Contact)
Governance of the database
Additional contact
Type of database
Database objective
Population type
Size of the database
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Detailed name National register of des pediatric hematological malignancies
Sign or acronym RNHE
CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation CNIL: 998198
General Aspects
Medical area Cancer research
Health determinants Genetic
Keywords incidence rates, types of leukemia and lymphoma, particular exposure, HIV mother, perinatal period, environmental exposures, survival, general population, risk
Scientific investigator(s) (Contact)
Name of the director Clavel
Surname Jacqueline
Address 16 avenue Paul Vaillant-Couturier F-94807 VILLEJUIF Cedex
Phone +33 (0)1 45 59 50 38
Email jacqueline.clavel@inserm.fr
Unit UMRS-1018 Equipe 6, INSERM, Université Paris-Sud
Organization Institut national de la santé et de la recherche médicale
Funding status Public
Details Institut national du cancer (INCa)Institut de veille sanitaire (InVS) Instittut national de la santé et de la recherche médicale (Inserm)
Governance of the database
Sponsor(s) or organisation(s) responsible Institut national de la santé et de la recherche médicale (Inserm)
Organisation status Public
Additional contact
Main features
Type of database
Type of database Morbidity registers
Additional information regarding sample selection. Recruiting of subjects having the required inclusion criteria
Database objective
Main objective 1) Establish low incidence rates for the various types of leukemia and lymphoma.
2) Provide continuous follow-up of the incidence and detect any increase in the national or localized incidence.
3) Supply the estimation of the survival in the general population of the various types of leukemia and lymphoma.
4) Contribute to following-up on the risk of pediatric cancers in populations subjected to particular exposure (children who have had a scan, child of an HIV mother and treated during the perinatal period, environmental exposures).
5) Provide the data that will make it possible to evaluate the care sectors for children from the first symptoms until treatment.
6) Contribute to the work in research on the risks factors of cancer in children developed by the team on Environmental epidemiology of cancers of the CESP, INSERM U1018.
Inclusion criteria Population less than 18 years of age suffering from primitive or secondary hematological or borderline malignancy (leukemia, lymphoma, myelodysplastic syndrome, myeloproliferative disease, Langerhans cell histiocytosis).
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
Geography area National
Detail of the geography area Metropolitan France (+ DOM)
Data collection
Date of first collection (YYYY or MM/YYYY) 1990
Size of the database
Size of the database (number of individuals) [1000-10 000[ individuals
Details of the number of individuals 6640
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) Examinations of tumor extensions
Biological data (detail) Pathological anatomy/cytology, immunophenotyping, cytogenetics, molecular biology of tumors
Administrative data (detail) Identification data (Last name, First name, Maiden name of the mother, Date of birth, Sex, Place of birth, Verification of Civil Status)Commune of residency for the diagnosticResidential historyCSP
Presence of a biobank No
Health parameters studied Health event/morbidity
Health event/mortality
Health care consumption and services
Care consumption (detail) Hospitalization
Medicines consumption
Data collection method active research in care departments and laboratoriesPMSI, ALD, CEPIDC (Epidemiological Center for Mortality by Medical Causes)
Participant monitoring Yes
Details on monitoring of participants Following cases until the age of 18 years is done continuously by survey takers in hospital departments in order to detect relapses, the various attacks of Langerhans cell histiocytosis and the acutisations of myelodysplastic syndromes and of myeloproliferative diseases.
Links to administrative sources Yes
Linked administrative sources (detail) CEPI-DC ALD
Promotion and access
Link to the document http://www.hal.inserm.fr/RNHE
Description Liste des publications dans 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 Liste des publications dans Pubmed
Terms of data access (charter for data provision, format of data, availability delay) Publications, website
Access to aggregated data Access on specific project only
Access to individual data Access on specific project only

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