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

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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01398813

Acronym

X-CORS

Enrollment

500

Registered

2011-07-21

Start date

2011-07-31

Completion date

2013-07-31

Last updated

2013-07-09

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Hypohidrotic Ectodermal Dysplasia, X-Linked Hypohidrotic Ectodermal Dysplasia

Keywords

HED, XLHED

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: MILLIC@mmc.org or 207-662-6712

Interventions

None listed

Study design

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

FEMALE

Age

18 Years to No maximum

Healthy volunteers

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;

Design outcomes

Primary

Measure	Time frame	Description
To study the outlook of XLHED carrier females toward reproduction, potential XLHED treatments and genetic testing.	study day 1	Survey results will be collected during the 1 day of subject involvement.

Countries

United States

Outcome results