A database open to the scientific community
The data from the Epipage 2 study are accessible to any public or private research team, French or foreign, on the basis of a research project and under the conditions specified in the data access charter.
The research teams that helped set up the Epipage 2 study have priority in accessing the databases. They are therefore granted exclusive access to the data for a period of 18 months from the date on which the data are made available for each wave of the survey. After this period, the data are made available to the entire research community.
Currently available data:
Data collected at birth
Data collected from maternity and neonatal ward
1-year follow-up questionnaire
2-year follow-up questionnaires
5-year follow-up questionnaires
How to submit a data access request ?
Complete the downloadable project sheet here
In turn, annotated questionnaires and variable catalogues will be sent to you for selection of the variables needed for analysis. Annotated catalogues should be returned to the above address.
Evaluation of data access request ?
Each request is evaluated by two committees :
- The Scientific Group (GS) is a group of epidemiologists, paediatricians and obstetricians who assess the scientific relevance of the submitted project.
- The Data Access Group (GAD), mainly composed of statisticians and data managers, provides technical support to the scientific group, in particular by assessing the technical admissibility of the project and by monitoring the data files transmitted.In particular, it ensures the compliance of the data processing submitted to the CNIL Reference Methodology MR-004 and invites project managers to obtain the necessary authorisations if needed.
After approval by the scientific group and the Data Access Group, the project leader must sign a letter of commitment before the data can be available.
The project leader has to inform the scientific group of the progress of the project and to submit any draft article, written or oral communication to the scientific group before submission.
How to make a combined application for Epipage-2 and ELFE data?
Two cohorts — Epipage 2 and ELFE, a larger generalist cohort of children born at term (https://www.elfe-france.fr/) — are collaborating as part of the RE-CO-NAI project (Plateforme de REcherche sur les COhortes d’enfants suivis depuis la NAIssance) to set up a research platform for cohorts of children followed up from birth (Put the link to the section below)
As part of RE-CO-NAI and from their beginning, the Epipage 2 and Elfe cohorts have pooled some data collection objectives and tools, while adapting them to the specificities of their different populations (preterm children and children born at term).
For any project involving both cohorts, an application to each cohort is required.
For Epipage 2, according to the procedure defined above,
For ELFE, by following the instructions you can find here (https://pandora.vjf.inserm.fr/public/).
The project will be evaluated by each cohort team and then by a data access group covering both cohorts.