Data security & ethics

All the data collected by Elfe are used anonymously and solely for research purposes. Only researchers whose research projects have been validated by scientific committees are allowed access to the data that parents have agreed to provide to the professionals.

Each stage of the survey is submitted for approval to the Expert Committee for Research, Studies and Evaluations in the Healthcare Field (CEREES), which judges the scientific relevance of health projects.

The Data Protection Authority (CNIL) grants permission to process the data that is collected and monitors procedures in order to guarantee the protection of personal data.

The relevant institutional review board (CPP) is also informed when the research has a biomedical component.

Moreover, the researchers have chosen to use a highly sophisticated data protection system. This is designed to meet the fundamental requirement that nobody involved in Elfe should be able to simultaneously access a child’s identity and the data pertaining to him or her. Scientists therefore always work on anonymous data.


Find out more about participants’ rights


Elfe received a favourable opinion from the French National Council for Statistical Information (CNIS) as a “noncompulsory survey in the public interest and of statistical quality”.