EDELIFE

resources

Brochures and infographics for EDELIFE

Overarching information sheet

2 MB PDF document
Download brochure

Information for families

90 Ko PDF document
Download brochure

The EDELIFE study at a glance

372 Ko PDF document
Download infographics

Dear Patient letter

178 Ko PDF document
Download letter

Web resources

Additional information on EDELIFE

You can also visit :
www.clinicaltrials.gov

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.

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.
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