Resources for Researchers and Clinicians

One of the Dystonia Coalition’s goals is to create resources that are easily accessible to the whole dystonia research community. These resources include educational materials, clinical data, video recordings of clinical exams, and DNA. To view aggregate Dystonia Coalition data, visit the public DC dataset. From there you will be able to see total data available based on gender, diagnosis, family history, and more. In order to access the dataset, you will need to log in through your home institution. If your institution is not listed in the dropdown menu, you can create a http://LogIn.Gov account to sign in. If you need further assistance, click the “Support Portal” button on the login page.

For more detailed information, please view the Dystonia Coalition data access form. To access these resources through the Dystonia Coalition, please complete the data access form and send it, and a one-page description of your study to program manager Gamze Kilic Berkmen at gamze.kilic.berkmen@emory.edu. The request will be reviewed by a committee and decisions are typically sent within one month.

DNA and a portion of the clinical data are also stored at the NINDS Repository at the Coriell Institute for Medical Research. To request DNA and/or data from this repository, please visit their website at catalog.coriell.org and follow the directions to submit a proposal.

Additionally, the dystonia Patient Advocacy Groups support a Patient Registry called the Global Dystonia Registry. Currently there are over 6,530 patients with dystonia in this registry. This registry can be helpful for research in many ways. It can be used to send an advertisement for any study to registrants in a certain geographic location or with certain dystonia symptoms. It can also be used to directly send a questionnaire to registrants for a survey study. For more information about the Global Dystonia Registry (GDR), please contact Kim Kuman at kkuman@dysphonia.org or complete the Global Dystonia Registry Request Form and send it to Kim.