Status:
COMPLETED
X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Carrier Outlook Toward Reproduction Survey
Lead Sponsor:
Edimer Pharmaceuticals
Conditions:
Hypohidrotic Ectodermal Dysplasia
X-Linked Hypohidrotic Ectodermal Dysplasia
Eligibility:
FEMALE
18+ years
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 a...
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
Eligibility Criteria
Inclusion
- Inclusion Criteria:
- 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;
Exclusion
Key Trial Info
Start Date :
July 1 2011
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
July 1 2013
Estimated Enrollment :
500 Patients enrolled
Trial Details
Trial ID
NCT01398813
Start Date
July 1 2011
End Date
July 1 2013
Last Update
July 9 2013
Active Locations (1)
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1
Carrie Milliard
Portland, Maine, United States, 04103