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

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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Key information

Conditions

Hypohidrotic Ectodermal Dysplasia Abnormalities, Multiple Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Ectodermal Dysplasia Ectodermal Dysplasia 1, Anhidrotic Genetic Diseases, Inborn Genetic Diseases, X-Linked Skin Abnormalities Skin Diseases Skin Diseases, Genetic Skin and Connective Tissue Diseases X-Linked Hypohidrotic Ectodermal Dysplasia

Age range

18 year and older

Sex eligibility

Female

Study type

Observational

Primary location

Carrie Milliard

Portland, Maine, 04103, United States

About this study

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

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Provide signed informed consent;
18 years of age or older
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;

Treatment and study plan

Primary outcomes

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

Time frame: study day 1

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

Sponsors and collaborators

Lead sponsor

Edimer Pharmaceuticals

Industry

Registry information

Official study title

Survey of X-Linked Hypohidrotic Ectodermal Dysplasia Carrier Women's Outlook Towards Reproduction, Potential XLHED Treatments and Genetic Testing

Acronym: X-CORS

Important dates

Study start: 2011
Primary completion: 2013
Study completion: 2013
First posted: Jul 21, 2011
Registry last updated: Jul 9, 2013

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed