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Diseases

Genetic and Rare Diseases Information Center (GARD)

IBIDS syndrome


Other Names for this Disease
  • Tay syndrome
  • Trichothiodystrophy with congenital ichtyosis
  • Ichtyosis, Brittle hair, Intellectual impairment, Decreased fertility, and Short stature
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research

Clinical Trials & Research for this 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.

Patient Registry

  • 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.
    Link: http://www.skinregistry.org/
Other Names for this Disease
  • Tay syndrome
  • Trichothiodystrophy with congenital ichtyosis
  • Ichtyosis, Brittle hair, Intellectual impairment, Decreased fertility, and Short stature
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.