Figure 2.

Data collection and sharing. Data for large multicenter projects are organized by individual sites (orange) and collected into a central database for checking, storage, and distribution. All Recruiting Sites (top left) may recruit subjects for the Natural History Project and the Biobank Project. Subgroups of Recruiting Sites are selected to participate in the other large multicenter projects including the Cervical Dystonia Rating Scale Project, The Blepharospasm Diagnosis and Rating Scale Project, the Laryngeal Dystonia Diagnosis and Rating Scale Project, and the Patient-Centered Outcomes Project. The Digital Measures Project analyzes video data collected by all projects. Data submitted to the central database are verified and organized and returned to the sites who manage the large multicenter projects, and are also shared with multiple additional users. For example, Recruiting Sites may request a summary of data they entered. Data are also shared with the National Institutes of Health (NIH) and the Data Management and Coordinating Center (DMCC) of the Rare Diseases Clinical Research Network. Subsets of data are also shared with the National Institute of Neurological Disorders and Stroke (NINDS) Repository at Coriell and with other users by request. DMRF, Dystonia Medial Research Foundation; JMU, James Madison University, RushU, Rush University; UCSD, University of California in San Diego; UNM, University of New Mexico; WashU; Washington University in St. Louis.