Brief Title
X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Carrier Outlook Toward Reproduction Survey
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 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: [email protected] or 207-662-6712
Study Type
Observational
Primary Outcome
To study the outlook of XLHED carrier females toward reproduction, potential XLHED treatments and genetic testing.
Condition
Hypohidrotic Ectodermal Dysplasia
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Estimated Enrollment
500
Start Date
July 2011
Completion Date
July 2013
Primary Completion Date
July 2013
Eligibility 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;
Gender
Female
Ages
18 Years - N/A
Accepts Healthy Volunteers
No
Contacts
Carrie Milliard, CGC, ,
Location Countries
United States
Location Countries
United States
Administrative Informations
NCT ID
NCT01398813
Organization ID
ECP-008
Responsible Party
Sponsor
Study Sponsor
Edimer Pharmaceuticals
Study Sponsor
Carrie Milliard, CGC, Principal Investigator, Maine Medical Partners Pediatric Specialty Care
Verification Date
July 2013