A prenatal study

for Ectodermal Dysplasia (XLHED) affected boys

illustration of a mom and her child

Welcome!

This website is dedicated to families looking for information about EDELIFE.

If you came to visit this web site, it is very likely that you are wondering whether you can take part in the EDELIFE research study.

This Web site is meant to explain to you what the EDELIFE study is about and what commitment it will require from you.

What you need to know about the EDELIFE study

We want to try and find a treatment for boys affected by XLHED.
We are conducting a study on a treatment called ER004, an experimental medicine. ER004 has been created to replace a protein that is missing in those affected by XLHED.
ER004 will be given before birth. The study is being conducted in several centres in Germany, France, Italy, Spain, United Kingdom and in the USA.

What’s new with the EDELIFE study?

December 2022

Clinical study is now open in the UK

February 2023

First pregnant woman to have joined the study in the US and received investigational treatment.

December 2022

Clinical study is now open in the UK

December 2022

Clinical study is now open in the UK (Cardiff).

February 2022

Clinical study is now open in the UK

July 2022

Clinical study is now open in the US -St Louis (MO).

February 2022

Clinical study is now open in the UK

June 2022

First pregnant woman to have received the 3 rounds of investigational treatment injections.

February 2022

Clinical study is now open in the UK

May 2022

Clinical study is now open in France, Germany, Spain and Italy.

February 2022

Clinical study is now open in the UK

November 2021

Clinical study is now open in Germany (Erlangen).

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