Other Names for this Disease
- Ichtyosis, Brittle hair, Intellectual impairment, Decreased fertility, and Short stature
- Tay syndrome
- Trichothiodystrophy type E
- Trichothiodystrophy with congenital ichthyosis
- Trichothiodystrophy with congenital ichtyosis
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On this page
- How to Get Involved in Research – A video developed by GARD Information Specialists that explains how you can find out about research for a rare disease.
- ClinicalTrials.gov lists trials that are studying or have studied IBIDS syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. Currently, 1 clinical trial is identified as enrolling individuals with trichothiodystrophy and 12 studies are enrolling individuals with ichthyosis. To find these trials, click on the link below and use "trichothiodystrophy" or “ichthyosis” as your search term. There are no studies presently on Tay syndrome specifically. Use the study’s contact information to learn more. Check this site often for regular updates. The ClinicalTrials.gov home page is http://www.clinicaltrials.gov.
- Foundation for Ichthyosis and Related Skin Types has funded ichthyosis-related research through its Research Grant Program.
- The National Registry for Ichthyosis and Related Disorders at the University of Washington was created with the support of the National Institutes for Health to encourage research into the diagnosis and treatment of the ichthyoses and related disorders. We have approached this goal by having people that are affected by these conditions enroll in the Registry as well as by sharing information about ongoing research projects with those who ask to be notified.
- The National Registry for Ichthyosis and Related Disorders at the University of Washington was created with the support of the National Institutes of Health (NIH) to encourage research into the diagnosis and treatment of ichthyoses and related disorders. Although the registry is no longer recruiting participants, you can learn more about the study by visiting the link below.
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.