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 new stage is submitted for approval to the Consultative Committee for Data Processing in Health Research (CCTIRS), which assesses the scientific relevance of health projects in France. Research projects with a biomedical dimension are also submitted to an institutional review board (IRB). All these procedures are monitored by the French Data Protection Authority (CNIL).
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.
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”.