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

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

Official Title: Survey of X-Linked Hypohidrotic Ectodermal Dysplasia Carrier Women's Outlook Towards Reproduction, Potential XLHED Treatments and Genetic Testing

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 Summary:

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: [email protected] or 207-662-6712


Sponsor: Edimer Pharmaceuticals

Current Primary Outcome: To study the outlook of XLHED carrier females toward reproduction, potential XLHED treatments and genetic testing. [ Time Frame: study day 1 ]

Survey results will be collected during the 1 day of subject involvement.


Original Primary Outcome: Same as current

Current Secondary Outcome:

Original Secondary Outcome:

Information By: Edimer Pharmaceuticals

Dates:
Date Received: July 19, 2011
Date Started: July 2011
Date Completion:
Last Updated: July 7, 2013
Last Verified: July 2013