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

Completed

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

• Registration Number: NCT01398813
• Lead Sponsor: Edimer Pharmaceuticals

Brief Summary

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.

Detailed 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: MILLIC@mmc.org or 207-662-6712

Study Timeline

• Study Start: 2011-07
• Study First Submitted: 2011-07-19
• Study First Submitted QC: 2011-07-20
• Study First Posted: 2011-07-21
• Status Verified: 2013-07
• Primary Completion: 2013-07
• Study Completion: 2013-07
• Last Update Submitted: 2013-07-07
• Last Update Posted: 2013-07-09

Recruitment & Eligibility

• Status: COMPLETED
• Sex: Female
• Target Recruitment: 500

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;

Exclusion Criteria

Not provided

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
To study the outlook of XLHED carrier females toward reproduction, potential XLHED treatments and genetic testing.	study day 1	Survey results will be collected during the 1 day of subject involvement.

Trial Locations

Locations (1)

Carrie Milliard; 🇺🇸 Portland, Maine, United States