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

Edimer Pharmaceuticals500 enrolled

Overview

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

Study Type

OBSERVATIONAL

Enrollment

500

Conditions

Hypohidrotic Ectodermal Dysplasia X-Linked Hypohidrotic Ectodermal Dysplasia

Eligibility

Sex: FEMALEMin age: 18 Years

Medical Language ↔ Plain English

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;

Locations (1)

Carrie Milliard

Portland, Maine, United States

Outcomes

Primary Outcomes

To study the outlook of XLHED carrier females toward reproduction, potential XLHED treatments and genetic testing.

Survey results will be collected during the 1 day of subject involvement.

Time frame: study day 1

Data from ClinicalTrials.gov

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