ITMO public health
Last update : 07/08/2015 | Version : 4 | ID : 60053
| General | |
| Identification | |
| Detailed name | Prospective Breast and Ovarian Genetic Study: genetic predisposition to breast and ovarian cancer: a prospective study of BRCA mutation carriers |
| Sign or acronym | GENEPSO |
| CNIL registration number, number and date of CPP agreement, AFSSAPS (French Health Products Safety Agency) authorisation | CNIL, CPP |
| General Aspects | |
| Medical area |
Cancer research |
| Health determinants |
Genetic |
| Keywords | BRCA gene mutation, standardised collection, prospective follow-up, Health events, death |
| Scientific investigator(s) (Contact) | |
| Name of the director | Fourme |
| Surname | Emmanuelle |
| Phone | +33 (0)1 47 11 15 15 ou +33 (0)1 47 11 16 57 |
| emmanuelle.fourme@curie.net | |
| Organization | Centre René |
| Name of the director | Noguès |
| Surname | Catherine |
| Phone | +33 (0)1 47 11 15 15 |
| catherine.nogues@curie.fr | |
| Unit | U735 |
| Organization | Centre René |
| Collaborations | |
| Participation in projects, networks and consortia |
Yes |
| Funding | |
| Funding status |
Mixed |
| Details | Ligue contre le Cancer, FDF |
| Governance of the database | |
| Sponsor(s) or organisation(s) responsible | Centre René HUGUENIN |
| 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 selection of health institutions and services |
| Database recruitment is carried out as part of an interventional study |
No |
| Additional information regarding sample selection. | Prospective |
| Database objective | |
| Main objective | General objective: to form a cohort of BRCA gene mutation carriers for standardised data collection and to establish a prospective follow-up over 10 years. Treatment for families can be improved by resolving certain questions (projects with associated INSERM teams): 1) what is the risk of developing breast and/or ovarian cancer for gene mutation carriers during their lifetime? 2) are cancer risks modified by environmental factors (in particular medical radiation), hormonal factors (endogenous or exogenous), or other genetic factors? 3) should the same parameters be used to evaluate the prognosis of sporadic cancer? 4) what is the psychological and social impact for people with a known predisposition to breast and/or ovarian cancer? |
| Inclusion criteria | Adult subjects with no mental disability who are BRCA genetic mutation carriers |
| Population type | |
| Age |
Adulthood (19 to 24 years) Adulthood (25 to 44 years) Adulthood (45 to 64 years) |
| Population covered |
Sick population |
| Gender |
Male Woman |
| Geography area |
National |
| Detail of the geography area | Multicentric cohort (29 centres throughout France) |
| Data collection | |
| Dates | |
| Date of first collection (YYYY or MM/YYYY) | 11/1999 |
| Size of the database | |
| Size of the database (number of individuals) |
[1000-10 000[ individuals |
| Details of the number of individuals | 1425 |
| Data | |
| Database activity |
Data collection completed |
| Type of data collected |
Clinical data Declarative data Paraclinical data Biological data |
| Clinical data (detail) |
Medical registration |
| Declarative data (detail) |
Paper self-questionnaire |
| Paraclinical data (detail) | Imaging |
| Biological data (detail) | Type of samples taken: Blood, tumour tissue |
| Presence of a biobank |
No |
| Health parameters studied |
Health event/morbidity Health event/mortality |
| Procedures | |
| Data collection method | Self-administered questionnaire: from a paper questionnaire (manual input) Interview: from a paper questionnaire (manual input) |
| Participant monitoring |
Yes |
| Details on monitoring of participants | Follow-up duration: 10 years |
| Links to administrative sources |
No |
| Promotion and access | |
| Promotion | |
| Link to the document | http://www.hal.inserm.fr/GENEPSO |
| Description | List of publications in HAL |
| Link to the document | http://www.ncbi.nlm.nih.gov/pubmed/?term=genepso+OR+24889689[uid]+OR+22378286[uid] |
| Description | List of publications in Pubmed |
| Access | |
| Terms of data access (charter for data provision, format of data, availability delay) | Data may be used by academic teams Data may be used by industrial teams |
| Access to aggregated data |
Access on specific project only |
| Access to individual data |
Access on specific project only |
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