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

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

500 participants

Study Classification

OBSERVATIONAL

Study Start Date

2011-07-31

Study Completion Date

2013-07-31

Brief Summary

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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.

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Detailed Description

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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

Conditions

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Hypohidrotic Ectodermal Dysplasia X-Linked Hypohidrotic Ectodermal Dysplasia

Study Design

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Study Time Perspective

CROSS_SECTIONAL

Eligibility Criteria

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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;

Minimum Eligible Age

18 Years

Eligible Sex

FEMALE

Accepts Healthy Volunteers

No