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
| 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 |
| 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 |
