Xavier Thierry

The project team at INED, which included nearly twenty people from various disciplines, had to be expanded for the launch of the national cohort. To do this, we recruited around thirty health professionals who were charged with coordinating survey deployment in different regions. They established agreements with 320 maternity units and trained a thousand interviewers, midwives for the most part, who approached mothers who were about to give birth. The services of the INED General Secretary also provided a great deal of support.

Thanks to a massive communications campaign, we succeeded in bringing more than 18,000 infants into the cohort. The second challenge is to maintain a relationship of trust with parents so that as many as possible agree to be interviewed repeatedly as their child grows up. After a first telephone interview when the child reaches the age of two months, the parents are contacted again on the child’s first birthday. So far, very few families (2%) have asked to leave the cohort. The number of interviews to be carried out is almost double the number of infants in the cohort because the mother and, if possible, the father are both interviewed.

The preparation and the first steps of the survey were financed by the institutions that are backing the project and by a government grant for large research infrastructure needs. To continue, we needed more resources. We have just received funding for the next eight years under the Ministry of Research’s Equipex programme. Nonetheless, we will need to flesh out our budget with other resources so that we can approach the families in ways other than by telephone: a home visit when the child is 3, and a medical examination around the age of 8.

The research teams involved in creating the questionnaires over the last few years have an 18-month exclusivity period. The first set of data will be available to them in early 2013. The Elfe research group is not a closed one, however. A new call for proposals in the social sciences will be launched in 2012. It will provide opportunities to work on new issues that, we hope, will interest INED researchers. Possible themes include the families’ financial situations and their impact on the child’s socialization and development; the choice of first name and surname; the emergence of difficulties in school, cognitive dysfunctions, and disabilities; and patterns of health care seeking.

Besides the website, the families receive an information bulletin each year that informs them about the initial study findings and the next steps. The researchers communicate with each other using an intranet and receive a newsletter containing detailed project information, notably on the experiences of the pilot cohort.