Clinical trial hypohidrotic ectodermal dysplasia

February 1, 2022 | News

Pierre Fabre and the EspeRare Foundation are launching EDELIFE, a clinical trial of a prenatal treatment for X-linked hypohidrotic ectodermal dysplasia (HED), a rare and disabling congenital disease.

This rare disease, which affects approximately 4 out of every 100,000 male births each year, is a genetic disorder with dermatological implications that can disrupt the development of the skin, sweat and sebaceous glands, hair, oral cavity, and mucous glands of the respiratory tract, and lead to serious complications such as hyperthermia, craniofacial malformations, and chronic respiratory conditions.

The clinical trial is international, involving 6 countries and 8 investigating centers. The trial started in Germany, at the University Hospital of Erlangen, where Prof. Schneider is the coordinating investigator of the study. It will start very soon in France at the Necker center, which will be open to recruitment in February 2022 with Professors Bodemer and Hadj-Rabia, as well as in Spain, the United Kingdom and a little later in Italy and the United States. Recruitment will be open in the target countries, as well as in neighboring countries.

A dedicated website( is under construction and will be available to interested families with information about the clinical trial and inclusion criteria. Information is also available at NCT04980638.