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 Fequently Asked Questions
  • How can I register?

People with a positive test result for DYT1 or any of the other Dystonia gene tests are welcome to voluntarily register themselves.  It is especially important to also register family members that carry this gene deletion as well, regardless of whether they display dystonia symptoms.  This can be done by chosing "Register Now" on the Home page.

  • What is DYT-1 Dystonia?

Dystonia is an autosomal dominant disorder, meaning that it may be manifested in some individuals who have a single copy of the mutated DYT1 gene. The mutation responsible for DYT1 dystonia is deletion of one of a pair of certain basic chemical "building blocks" of DNA known as guanine, adenine, and guanine (GAG trinucleotides) in the DYT1 gene's coded instructions. The DYT1 gene regulates or "encodes" production of a protein known as torsinA. Although the protein's specific function is unknown, it appears to be related to a class of proteins (heat-shock proteins) that enable cells to recover from injury or stress. TorsinA is found in neurons throughout the brain.

  • Will the information in the registry be confidential?

Yes, the information collected in the registry will remain confidential as required by law.  All information will be collected and stored using technology designed to protect confidentiality.  No one, other than the DIPR registry personell will ever see any personal information.

  • Where can I get more information?

There will be periodic updates of information on this registry website.  Information about ongoing research that the registry is involved in, under the"Research" button at the top of the Home page.  You can also contact registry personnel by sending questions and suggestions to