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

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X-linked Hypohidrotic Ectodermal Dysplasia
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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