Ectodermal Dysplasia Clinical Trial
Official title:
Evaluation of Phenotypic and Genetic Properties in Male Subjects With Hypohidrotic Ectodermal Dysplasia and Their Family Members
To characterize skin properties in male subjects with HED
This study is designed to obtain information from male subjects with HED and unaffected male
control subjects. The study will consist of the standardized collection of data from HED
medical history questionnaires and non-invasive tests. A subset of subjects will undergo
genetic testing. All data will be collected from families attending the 2010 NFED Family
Conference, July 22-24, 2010, in Colorado Springs, CO.
Since HED is a rare disease, it is difficult to obtain reliable data on a sufficient number
of subjects in any one region. The NFED Family Conference is a location where families
affected with HED come together, and therefore, presents an ideal location to obtain data
needed to design future studies. As the procedures are non-invasive and are designed to take
a relatively short period of time, subjects can participate in this study while attending
the NFED Family Conference.
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N/A
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