Researchers Need Adult & Child Volunteers

Do you have the genetic forms of dystonia known as DYT6 (THAP1) or DYT25 (GNAL)? Have you or your child had previous positive genetic testing for either DYT6 (THAP1) or DYT25 (GNAL)?

If yes, you and family members, aged 7 or older, can become part of the Dystonia Partners Research Bank at Massachusetts General Hospital. The purpose of the research bank is to collect, process, and store samples and information from people with dystonia and their family members until researchers anywhere in the world need them to do research.
When you join the bank, researchers conduct a videotaped neurological exam, collect medical history information, family history information and a blood sample. Some people qualify for the optional procedure of giving a skin sample. Those who qualify for the optional procedure MAY also qualify for a no cost flight to and hotel stay in Boston.

Researchers get DNA from the blood sample. The DNA and your information is kept for many years. Research genetic test results are NOT available to people who take part in the research study.

If you would like to learn more or join this research bank, please contact a research bank coordinator at 617-724-3804 or 617-724-3856.