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Article History

Received: 9 October 2024

Accepted: 1 April 2025

First Online: 15 April 2025

Declarations

:

: The XLHED Carrier Outlook toward Reproduction Survey (X-CORS) was approved by the institutional review board of Maine Medical Partners Pediatric Specialty Care Portland (USA) in July 2011. Ethical approval for the EDELIFE trial was obtained from the ethics committees at all participating study sites. The first institutional review board that approved this clinical trial was the ethics committee of the University of Erlangen-Nürnberg in Germany (reference number 264_21 Az; date of approval: September 20, 2021). Women who participated in the XLHED Carrier Outlook toward Reproduction Survey provided written informed consent. The second survey in 2023 (completed online) was carried out in such a way that the project could not link individual responses with participants’ identities. In the EDELIFE trial, written informed consent of each pregnant woman and her partner was obtained.

: Not applicable.

: HS received both public and private funding for the current EDELIFE trial (see below) and holds a patent related to the prenatal therapy of XLHED, but signed a Remuneration Waiver Agreement to relinquish any personal financial gain from this invention; he has had a consulting or advisory role, received honoraria, research grants, and/or travel support from Edimer Pharmaceuticals, Krystal Biotech, Novartis, Pierre Fabre, Roche, SRE GmbH, and Wyeth Pharma GmbH. MG and AJ are employees of Pierre Fabre Médicament and the EspeRare Foundation, respectively.