• Dystonia Trials

    Title: Dystonia Coalition Projects 

    Study Identifier: LCID: 2013-007; Dystonia 

    Principal Investigator: Julie Leegwater-Kim, MD, PhD 

    Sponsor: National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS) and the Office of Rare Disease Research (ORDR) 

    Purpose: To develop a better understanding of dystonia diseases and help improve the treatments of affected patients by creating a biorepository (or large database) containing various clinical presentations and natural histories of different dystonias.  

    Summary: Dystonia is a disorder classified by the involuntary movements of muscles, usually characterized by odd body postures and twitching movements. As the many subtypes of dystonia are relatively rare, there have not been any studies successful in providing a comprehensive gathering of information from all different types of dystonia. Participants in this study will be asked their permission to be videotaped during basic neurological testing. These videotapes are sent to a large biorepository where they will serve as a resource for future research in dystonia. Participants will also be asked to provide a blood sample for analysis, and some volunteers may be asked to return on a yearly basis to conduct another videotaped exam.  

    Study Type: This is an observational study. 

    Length/Duration: Patients who are asked to return yearly will participate in this trial until it is closed. For all other patients, it is a one-time visit.  

    Contact: For more information on this study, please contact the study coordinator at Debora.G.Pimentel@lahey.org or 781-744-8383. 

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