HOPE-EPI - HOPE-Epidemiology - Epidemiological Research in Pediatric Hemato-Oncology
Head :
Clavel Jacqueline, UMRS-1018 Equipe 6
Last update : 02/05/2016 | Version : 2 | ID : 3121
| General | |
| Identification | |
| Detailed name | HOPE-Epidemiology - Epidemiological Research in Pediatric Hemato-Oncology |
| Sign or acronym | HOPE-EPI |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL |
| General Aspects | |
| Medical area |
Cancer research Hematology Pediatrics |
| Health determinants |
Climate Genetic Geography Iatrogenic Medicine Pollution Social and psychosocial factors |
| Keywords | national tools, research infrastructure, health events, pediatric oncology, environnemental and genetic risk factors, social and territorial determinants, iatrogenic effects of treatments |
| Scientific investigator(s) (Contact) | |
| Name of the director | Clavel |
| Surname | Jacqueline |
| Address | UMRS-1018 Equipe 6, INSERM, Université Paris Sud, 16 avenue Paul Vaillant Couturier F-94807 Villejuif Cedex |
| Phone | 0145595038 |
| jacqueline.clavel@inserm.fr | |
| Unit | UMRS-1018 Equipe 6 |
| Organization | INSERM |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Funding | |
| Funding status |
Public |
| Details | ANR "Investissements d'avenir -Grand emprunt" |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Inserm |
| Organisation status |
Public |
| Additional contact | |
| Main features | |
| Type of database | |
| Type of database |
Study databases |
| Study databases (details) |
Cohort study |
| Database recruitment is carried out by an intermediary |
A population file |
| Database recruitment is carried out as part of an interventional study |
No |
| Database objective | |
| Main objective |
The objective of our project is to develop, from the existing national tools, a national research infrastructure pooling the work to collect data and validate information and health events in the service of an epidemiological research program in the field of pediatric oncology addressing :
- the environnemental and genetic risk factors for childhood cancer, - the differences in management and their social and territorial determinants, - the iatrogenic effects of treatments, - and more generally, the state of health in the short-, intermediate- and long-term of people experiencing childhood cancer and the determinants of their quality of life. The project, closely connected with the pediatric oncology research of other disciplines, has, as a secondary objective, contributing to the sharing of data across disciplines. |
| Inclusion criteria | Children aged less than 18 years with cancer |
| 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 |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 2010 |
| Date of last collection (YYYY or MM/YYYY) | 2020 |
| Size of the database | |
| Size of the database (number of individuals) |
Greater than 20 000 individuals |
| Details of the number of individuals | 2010 : 170002020 : 35000 |
| Data | |
| Database activity |
Current data collection |
| Type of data collected |
Clinical data Paraclinical data Biological data Administrative data |
| Clinical data (detail) |
Direct physical measures Medical registration |
| Details of collected clinical data | Diagnostic : Date of diagnosis, Histology, Cytology, Cytogenetics, Immunophenotype, Molecular biology, Topography, Staging (/classification) Coding (ICD-O and ICCC) Healthcare pathway. Traitment : Risk classification, Date treatment started, Protocol arm, Chemotherapy (date, drugs, cumulative doses), Surgery (date, type and site), Radiotherapy (date, type, site and dose), Stem cell transplantation (date, type and source) |
| Paraclinical data (detail) | Medical imaging |
| Biological data (detail) | --- |
| Administrative data (detail) | Location since birth, basic information, ... |
| Presence of a biobank |
Yes |
| Contents of biobank |
Whole blood |
| Details of biobank content | --- |
| Health parameters studied |
Health event/morbidity Health event/mortality Health care consumption and services Quality of life/health perception |
| Care consumption (detail) |
Hospitalization Medical/paramedical consultation Medicines consumption |
| Procedures | |
| Participant monitoring |
Yes |
| Links to administrative sources |
Yes |
| Linked administrative sources (detail) | SNIIR-AM |
| Promotion and access | |
| Promotion | |
| Link to the document | Hope-Epi.pdf |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Contact the scientific board |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
