The Rare Diseases Clinical Research Network is an NIH-funded research network of 20 active consortia or research groups working to advance treatment for diseases that are rare. Use the search tools on this page to find the diseases we currently study. You can reach out to the indicated consortia or research groups for more information on those diseases and studies underway.
This network focuses on clinical research and does not generally support clinical care outside of research activities. To learn about other rare diseases, please visit the Genetic and Rare Diseases Information Center (GARD), which is an NIH program that helps the public find reliable information about rare and genetic diseases. Their staff are specialists. Contact them at 1-888-205-2311 or email GARDinfo@nih.gov.
All Diseases > Generalized Dystonia
Disease Category: Dystonias
A movement disorder affecting most or all of the body. Symptoms include uncontrollable, sometimes painful, involuntary muscle contractions, resulting in repetitive shaking, turning, and twisting of affected body parts.
Research groups studying this disease
Dystonia Coalition (DC)View Disease Definition
6305: Dystonia Coalition Projects-3 (DCP3): Natural History; Objective Measures; Biobank; Patient-Centered Outcomes
This research includes four related projects each having different but overlapping goals. The first three projects, Natural History, Objective Measures, and Biobank, go together because they are related. The Patient-Centered Outcomes project is optional and depends on the type of dystonia you have and its treatment. 1. Natural History Project: The aim of this observational project is to better characterize the heterogeneity of clinical manifestations among subjects with dystonia, how these manifestations evolve over time, and how they relate to other family members. 2. Objective Measures Project: The aim of this project is to exploit technological advances for the development of objective tools to measure the severity of dystonia. 3. Biobank Project: The aim of this project is to develop a resource that expands the existing dystonia DNA biorepository to include other biomaterials. To date, no large multi-center open-access biorepository exists for any type of dystonia. 4. Patient-Centered Outcomes Project: The aim of this project is to delineate both between-subject and within-subject variations over time in response to the standard of care treatment with Botulinum toxin (BoNT) injections.
The mission of BEAT DYSTONIA is to encourage and fund scientific research for advanced treatments and ultimately, a cure for dystonia; personally advocate for those living with dystonia and their families and finally, to tirelessly raise awareness about dystonia in mainstream worldwide media. Beat Dystonia operates with zero overhead.
Improves quality of life for people living with dystonia in Europe and supports the search for a cure.
Promotes scientific research into the causes and treatments of dystonia, raises awareness, and offers support and information to patients and families.
Dystonia Medical Research Foundation
Works to find a cure and serve people affected by dystonia and their families.
Dystonia Medical Research Foundation Canada
Advances research, promotes awareness and education, and supports the needs and well-being of individuals and families affected by dystonia.
Dystonia UK is the only national charity in the United Kingdom dedicated to helping people living with dystonia. They provide support for people with dystonia and their families through the publication of information and updates, influencing national policies and best practice, supporting research and development, and raising awareness of the little-known condition.
Tyler's Hope for a Dystonia Cure
Works to advance research for a cure, discover effective treatments, and promote awareness and education of DYT1 dystonia.
New Zealand Dystonia Patient Network
Supports dystonia patients, increases awareness, and facilitates research with the aim of seeking better treatments, prevention, and a cure.
Dystonia Network of Australia
Provides a pathway to support, information, literature, and community awareness for those affected by dystonia and their caregivers.