The study for

Ectodermal Dysplasia (XLHED) affected male relatives

The EDELIFE study

If you are an XLHED-affected male blood relative of a pregnant woman whose son will be treated in the study, this section presents what your participation in the study will look like.

How to participate

To participate, you must be aged between 6-months and 60 years old and must be a XLHED-affected blood relative of the pregnant woman. You must not have been treated with ER004 previously.

You will be asked to come to the clinical site for one visit only. This visit must take place before the treated baby reaches 6 months of age.

Before the visit, the medical team will have shared with you more detailed information about the study to help you decide whether or not to participate.

If you do choose not to participate, your involvement in the study will end and we will not contact you again. Please be reassured that your medical care will not be affected by this decision. If you choose to participate in the study, you will come for one visit to the medical site.

This visit will take between a half and a full day.

Medical tests will be conducted on you. Most of these tests are non-invasive and should not lead to any major discomfort for you, but a blood sample may be required to confirm the XLHED mutation.

Illustration of the panel of tests that you will undergo when you come for your visit

What if I don’t want to participate anymore?

Please remember that you have the right to decide, at any point during the study, not to participate any longer, even if you had initially chosen to participate.This decision will not affect the medical care you receive in any way.
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