EDELIFE Clinical Trial of treatment in utero for X-linked hypohidrotic ectodermal dysplasia: recruiting in Cardiff

Sites wanted to identify potential cases for clinical trial of a novel treatment for the rare disease X-linked hypohidrotic ectodermal dysplasia (XHED). EDELIFE, is an international trial that involves Germany, France, Italy, Spain and USA as well as UK. Collaboratively, we seek to recruit a grand total of 20 pregnant women carrying a male fetus affected by this rare condition, give the treatment by three intra-amniotic injections at 26, 29 and 32 weeks gestation, and follow the treated boys to 5 years of age. The intervention is administered in utero by intra-amniotic injection and triggers the development of sweat glands in male fetuses who would otherwise be born unable to sweat, and perhaps to correct other aspects of the condition too (e.g. the lack of teeth). The investigators need to be in contact with interested pregnant women by 20 weeks gestation. For further information visit https://edelifeclinicaltrial.com or contact Professor Angus Clarke clarkeaj@cardiff.ac.uk