EDELIFE
resources
Brochures and infographics for EDELIFE
Web resources
EDELIFE glossary
Amniocentesis
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.
on the EDA gene.
Data
Information gathered in studies to help address research questions, such as assessing treatment effects.
Eligible
Confirmation that a participant has met all the requirements to be included in the study.
ER004
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.
Follow-up
The part of the study where children are checked for the impact of the treatment, from birth to 5-years of age.
Genotype
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.
MRI
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.
Safety
Detection, assessment, understanding and prevention of side effects.
Screening
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.
Sponsor
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
Treatment
The part of the study where the treatment takes place, during the pregnancy.
Ultrasound
Type of scan that uses high-frequency sound waves to create an image of part of the inside of the body.