X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Carrier Outlook Toward Reproduction Survey
| Status: | Completed |
|---|---|
| Conditions: | Hematology |
| Therapuetic Areas: | Hematology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 5/27/2013 |
| Start Date: | July 2011 |
| End Date: | June 2013 |
| Contact: | Carrie Milliard, MS, CGC |
| Phone: | 207-662-6712 |
Survey of X-Linked Hypohidrotic Ectodermal Dysplasia Carrier Women's Outlook Towards Reproduction, Potential XLHED Treatments and Genetic Testing
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.
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
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;
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