Brochure and infographics on EDELIFE

Overarching information sheet

2.3 MB PDF document
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The EDELIFE study at a glance

502 Ko PDF document
Download infographics

Information for families

175 Ko PDF document
Download brochure

Taflen wybodaeth trosfwaol

(Overarching information sheet in Welsh)
2 MB dogfen PDF

Web resources

Additional information on EDELIFE

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EDELIFE glossary


A procedure used during pregnancy to take out a small sample of the amniotic fluid for testing.

Amniotic fluid

Liquid that surrounds your baby during pregnancy.

Clinical study/trial

An experiment or research study involving people, intended to gain medical knowledge.

Comparator group

XLHED-affected male relatives of the pregnant woman, who have not received the treatment and will serve as a reference point for what the untreated symptoms are like.

Confirmed genetic diagnosis

DNA testing / Medical test to identify the changes (mutation)
on the EDA gene.


Information gathered in studies to help address research questions, such as assessing treatment effects.


Confirmation that a participant has met all the requirements to be included in the study.


A replacement for the EDA protein that is made in a laboratory.

Experimental medicine

A medicine that has not yet been approved for use and is therefore not commercially available.


The part of the study where children are checked for the impact of the treatment, from birth to 5-years of age.


Genetic constitution of an organism.

Informed consent

The process of learning the key facts about a clinical study before deciding whether or not to participate.


Type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.

Participants, subjects

Names given to the people taking part in a clinical study.

Prenatal treatment

Treatment given to the unborn baby before he is born, in his mother’s womb.


Detection, assessment, understanding and prevention of side effects.


The part of the treatment where pregnant woman decides whether to join the study or not and is checked for eligibility.

Side effect

Any undesired actions or effects of a drug or treatment.


The parties responsible for initiating and/or financing the EDELIFE study.

Standard of care

A treatment plan that the majority of the medical community would accept as appropriate.

Study doctor

The doctor who directs the study or some of its activities

Treated subject group

Babies and children who will have taken part in the study and who will have received the treatment, ER004


The part of the study where the treatment takes place, during the pregnancy.


Type of scan that uses high-frequency sound waves to create an image of part of the inside of the body.
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