Collaborating with the Dystonia Coalition
The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups supported by the Office of Rare Diseases Research in the National Center for Advancing Translational Sciences and The National Institute of Neurological Disorders and Stroke at the NIH. We are more than 30 participating centers distributed throughout North America and Europe. The Dystonia Coalition has an open-door policy in which new investigators and institutions may join the effort at any time. Each of these centers may participate in ongoing research projects, submit proposals for new projects, or nominate candidates for career development awards.
The Dystonia Coalition will focus initially on the primary focal dystonias including cervical dystonia, spasmodic dysphonia, blepharospasm and craniofacial dystonia, and limb dystonias. Four main studies are planned, each involving several academic centers.
- Natural History Study of Primary Dystonia. The goal of this study is to get a fuller understanding of how the different forms of dystonia may change over time. Patients with any of the primary focal dystonias will be evaluated carefully at yearly intervals to reveal any changes that may occur over time. A blood sample for the Biorepository for Primary Dystonia will be collected from subjects in this Natural History study at the outset for genetic and other studies.
- Biorepository for Primary Dystonia. The goal of this study is to build a large collection of DNA samples for genetic studies of patients with primary focal dystonia.
- Comprehensive Evaluation Tools for Cervical Dystonia. The goal of this study is to refine a clinical rating scale for the many different aspects of cervical dystonia. The new scale will address the movement disorder, pain, psychological correlates, functional disability, and overall quality of life. This scale is intended to be useful for monitoring progression and responses to treatments in clinical trials.
- Comprehensive Evaluation Tools for Spasmodic Dysphonia. The goal of this study is to develop and test a novel rating scale that can be used to diagnose the disorder and measure its severity. This scale is intended to help physicians more quickly and accurately diagnose spasmodic dysphonia, and to help monitor responses to treatments in clinical trials.
In addition to the three large studies outlined above, the Dystonia Coalition also will encourage the development of new studies and investigators relevant to dystonia, promote education and awareness of dystonia, and assist patients in finding state-of-the-art information and expert providers.
- Pilot Projects Program. The goal of this program is to foster the most promising clinical and translational studies relevant to primary dystonia. Such studies may include the development of clinical rating scales where they do not yet exist, the exploration of biomarkers that could be used for diagnosis or as a surrogate for monitoring the disease, pilot clinical trials of promising new treatments, the development of unique shared resources for dystonia research, and other projects. Applications will be accepted twice yearly, with anticipated amounts of $10,000 - $50,000. Priority will be given to clinical studies rather than basic science. Emphasis will be placed on studies that have high impact, provide pilot data essential for larger studies, and encourage collaboration among different centers.
- Interested applicants can find more details about the latest solicitation for applications towards the bottom of our News & Events section or contact our program coordinator for more details.
- Click here to see projects that have been funded by the Dystonia Coalition in the past.
- In addition to the funding opportunities described on this page, click here for a list of patient advocacy groups who offer funding to researchers interested in dystonia
- Career Development Award. The primary goal of this program is to facilitate career development for junior investigators interested in clinical and translational research relating to dystonia. A secondary goal is to encourage more senior investigators from other fields to get more involved in dystonia research. Applications will be accepted up to twice yearly, and each award will be $50,000.
- Promoting education and awareness. Our centers are active in promoting education and awareness among colleagues and other medical provides, and in the community. We regularly help to organize and participate in regional and international meetings. See News and Events for some of our recent and upcoming events.
- Assist in connecting patients with expert providers. Although our primary mission is research, we also want to assist patients and their families in connecting with the best medical providers. Those in need may contact any one of our sites directly. Our Patient Advocacy Groups can also facilitate finding skilled medical providers.