ITMO public health
Last update : 07/02/2015 | Version : 2 | ID : 61
| General | |
| Identification | |
| 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 Hematology |
| Health determinants |
Genetic Geography Pollution |
| 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 |
| jacqueline.clavel@inserm.fr | |
| Unit | UMRS-1018 Equipe 6, INSERM, Université Paris-Sud |
| Organization | Institut national de la santé et de la recherche médicale |
| Collaborations | |
| Funding | |
| 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 Woman |
| Geography area |
National |
| Detail of the geography area | Metropolitan France (+ DOM) |
| Data collection | |
| Dates | |
| 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 |
| 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) | 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 |
| Procedures | |
| 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 | |
| Promotion | |
| 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 |
| Access | |
| 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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