An observational study in Hypohidrotic Ectodermal Dysplasia and X-Linked Hypohidrotic Ectodermal Dysplasia, sponsored by Edimer Pharmaceuticals. Completed at 1 site in United States. Open to female participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2013-07-09.
Sponsored by Edimer Pharmaceuticals · Observational
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
21 studies on the registry are indexed under Ectodermal Dysplasia 1, Anhidrotic; 1 is open to participants now.
This study's planned enrollment of 500 is above the median of 33 across 16 observational studies indexed under Ectodermal Dysplasia 1, Anhidrotic.
Browse Ectodermal Dysplasia 1, Anhidrotic studies →Edimer Pharmaceuticals is the lead sponsor of 13 studies on the registry; none are open to participants now.
Counted across the registry records on this site, refreshed daily.
The study will enroll XLHED carrier females
Inclusion Criteria:
Females with:
the clinical characteristics of HED, including at least two of the following characteristics:
clinical signs and symptoms of HED:
AND
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
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
This study is completed, as verified in Jul 2013. You cannot join it, but the record below documents what was studied.
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Ectodermal Dysplasia 1, Anhidrotic →
Edimer Pharmaceuticals