X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Carrier Outlook Toward Reproduction Survey

Completed

Conditions studied: Hypohidrotic Ectodermal Dysplasia, X-Linked Hypohidrotic Ectodermal Dysplasia

In brief

In this survey of X-Lined Hypohidrotic Ectodermal Dysplasia (XLHED) carrier females, Edimer proposes to review responses to an XLHED Carrier Outlook toward Reproduction Survey in order to understand attitudes toward reproduction, potential treatments and genetic testing in order to improve the understanding of the decisions that XLHED carrier females make regarding their reproductive future.

Key facts

Study ID

NCT01398813

Run by

Edimer Pharmaceuticals

People needed

500

Starts

2011-07-01

Expected to finish

2013-07-01

Last updated by the study team

2013-07-09

Who can join

Age: 18 and older. Sex: female. Healthy volunteers: not accepted.

You may qualify if…

• Provide signed informed consent;
• 18 years of age or older
• Females with:
• the clinical characteristics of HED, including at least two of the following characteristics:
• clinical signs and symptoms of HED:
• a history of decreased sweating;
• abnormal teeth (fewer permanent teeth, teeth are smaller than average and often have conical crowns);
• sparseness of scalp and body hair;
• AND
• a clinical diagnosis from a healthcare professional;
• or at least one HED affected family member
• OR genetically confirmed HED or XLHED;

Where it is running

• Carrie Milliard — Portland, Maine, United States

Full record on ClinicalTrials.gov

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