Evaluation of Phenotypic and Genetic Properties in Male Subjects Affected By Hypohidrotic Ectoder… (NCT01108770) | Clinical Trial Compass
CompletedNot Applicable
Evaluation of Phenotypic and Genetic Properties in Male Subjects Affected By Hypohidrotic Ectodermal Dysplasia
United States62 participantsStarted 2010-07
Plain-language summary
To characterize skin properties in male subjects with HED
Who can participate
Age range
1 Year
Sex
MALE
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion criteria
. Registered and attending the 2010 NFED Family Conference;
. One year of age or greater;
. Conform to one of the following requirements for providing informed consent:
. Subjects must meet one of the following criteria:
Exclusion criteria
. Known hypersensitivity to pilocarpine or pilocarpine-like muscarinic agonists.
. Presence of pacemakers.
. Subjects who are not able or are not willing to comply with the procedures of this protocol.
. Subjects with any major medical problem that will prevent them from participating in this study.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this study focused on characterizing skin properties and genetic features in males with hypohidrotic ectodermal dysplasia rather than testing a treatment, what did researchers actually learn from it that might be relevant to my son's or my own care?
2This trial has already been completed — is the data from it published anywhere, and could you help me understand what the findings about skin and genetic properties mean for how HED is managed going forward?
3Because this was a characterization study comparing affected males to healthy controls rather than a treatment trial, does participating in or reviewing studies like this one help build toward future therapies, and are there any active treatment trials I should know about?
4Given that this study specifically enrolled male subjects, how does the genetic and phenotypic information gathered here apply to understanding HED in females or in children, if that's relevant to my family situation?
5Are there follow-up studies or registries building on this research that my doctor would recommend we look into, especially ones that might eventually connect to new treatment options for hypohidrotic ectodermal dysplasia?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Characterization of skin properties in HED affected male subjects compared with healthy controls
Timeframe: Two assessments conducted once during study day.