Here are some frequently asked questions, if you have more write us: firstname.lastname@example.org
If you have a question or would like to offer a suggestion about how to help, please email us at
Your involvement is critical to the future of the DIPR Registry and assists research for a dystonia cure.
Frequently Asked Questions
1How 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 choosing "Register Now" on the Home page.
2What 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.
3Will 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 personnel will ever see any personal information.
4Where 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 email@example.com.
5Can I unenroll at any time?
Yes, to unenroll please email firstname.lastname@example.org and we will remove you.