Latest database descriptions

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?

More than 10 years are passed since the beginning of the EPIPAGE study. The evolutions occurred since justify the creation of a new cohort.

The main objectives of EPIPAGE 2 are:

1) Study the becoming of extremely premature children and their families
2) The evaluation of care organization effects and medical practice on premature children’s health and development
3) Research of causes and consequences of prematurity
4) Study the path of the different families and the decisions process at the moment of birth and intensive care
5) The needs analysis of medical and educational care

One of the originalities of the study is to have permitted the creation of complementary and multidisciplinary projects, in order to reply and deepen to question difficult to handle on the children of the cohort. These projects, based on the same structure of EPIPAGE 2, needs additional investigations and an own funding.
A total of 8 studies have been developed in the field of brain imaging, bio-markers, nutrition, mother-child interaction and ethics:

- ETHIQUE (decision process leading to survival or death of children born between 22 and 26 weeks of amenorrhea)
- EPIFLORE (study of the introduction of the intestinal microbiota)
- EPIRMEX (Study of the executive functions and of the language development, depending on anomalies detected through NRM)
- BIOPAG (Identification of the early bio-markers of pathologies from an umbilical cord sample (DNA, RNA)
- OLIMPE (Study of the existing links between the quality of early mother-child interactions and the neural and developmental becoming)
- CHORHIST (Research of chorioamniontides through anatomo-pathological analysis of placenta)
- EPINUTRI (Study of the associations of the intake of polyunsaturated fatty acids, iron intake and neurological becoming of extremely premature children)
- EPIPAIN 2 (treatment of painful movements in neonatal intensive care.

RE-CO-NAI platform
EPIPAGE 2 is one of the two cohorts constituting the RE-CO-NAI platform, together with the ELFE cohort.
The general objective of this platform is to create an infrastructure offering the measures required for collecting, highly secured storage and distribution of data concerning the pregnancy, the birth and the child.
The research platform consist of cohorts of infants followed since birth will allow to study, in a global and multidisciplinary way, the stakes on health, development and socialization of children.
It will in addition provide substantial visibility in the world of academic research (French and international), but also with regards to bodies, associations, and industries that have interests in children. As such, it will allow for an optimized valorization of the data collected and will facilitate the dissemination of data.

The objectives of the cohort involving women related to a child suffering from ataxia telangiectasia (AT) are multi-layered: 1. To monitor female relatives for early detection of breast cancer (BC). 2. To estimate the risk of cancer associated with AT genes with a focus on BC risk. To investigate the role of potential modifying factors for this risk such as radiation, hormonal factors etc. 3. To investigate the natural history of BC in AT heterozygous women

To study the development of contraceptive practices and biographies over time as well as acceptability and access to various methods of contraception. To investigate the circumstances surrounding contraceptive failure and to measure the effectiveness of methods of contraception. To study the decision-making processes for pregnancy options with regard to unplanned pregnancy. To study access channels to health care providers for elective abortion. To study the health effects of contraception and elective abortion.