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

Edimer Pharmaceuticals

Status: Completed

Conditions: X-Linked Hypohidrotic Ectodermal Dysplasia; Hypohidrotic Ectodermal Dysplasia

Study type: Observational

Funder types: Industry

Identifiers

NCT01398813

ECP-008

Details and patient eligibility

About

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.

Full description

The full survey is available here: https://www.surveymonkey.com/s/X-CORS

For more questions or more details you may contact the Principal Investigator, Carrie Milliard: [e-mail] or 207-662-6712

Enrollment: 500 estimated patients

Sex: Female

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

Inclusion Criteria:

1. Provide signed informed consent;

2. 18 years of age or older

3. 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;