Warning: As part of the improvement of our practices and to take into account the advice of the french Commission for access to administrative documents (CAAD) issued on 11/02/2021, the report has been withdrawn to ensure the absence of any data that could present a risk of indirect identification. This report, re-evaluated and brought into conformity with the CAAD recommendations, will soon be available again on our site. Abstract : Between 2010 and 2015, three clusters of children with transverse agenesis of the upper limbs (TAUL) were reported in three departments: Ain, Loire-Atlantique and Morbihan, but the investigations carried out in these regions have been unable to identify any common cause. TAUL, which is diagnosed at the latest at birth, refers to rare birth defects that are debilitating both in childhood and throughout adult life. These clusters of children with TAUL and the results of the investigations which were made available to the public incited an outcry, bringing to light the fears of the affected families, their lack of understanding and their dissatisfaction with the answers provided, and calling into question both the reporting systems and the assessment carried out by the health agencies. The media has primarily relayed information on the discussions held by professionals relating to the surveillance and alert tools in place, the investigation into the clusters and the search for the cause of these defects, with many questions being raised on their potential environmental origin. In order to respond to the questions raised by both the families affected and the public, and more generally to their expectations for better management of these malformations in terms of surveillance, research and support, a collective expert appraisal was requested by the ministers respectively responsible for solidarity and health, ecological and sustainable transition, and agriculture and food (Appendix 1). This report presents the initial results of the SEC's work on TAUL. It is therefore an initial report that will later be completed by a final report incorporating the results of the analysis of the literature review on risk factors.
Auteur : Scientific Expert Committee on TAUL
Année de publication
: 2019
Pages : 262 p.
