Global Dystonia Registry
Patient registries collect information directly from volunteers who are diagnosed.
The DMRF is proud to support the Global Dystonia Registry and encourages individuals to consider participating. The Global Dystonia Registry is part of the Dystonia Coalition, a cooperative project between medical researchers and dystonia patient advocacy groups, for which the DMRF serves as an administrative center.
The goal of the Global Dystonia Registry is to support future dystonia studies, including clinical and research trials, through the collection of data on persons affected by dystonia. Although the focal dystonias have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share.
Your responses will help researchers better understand the dystonia experience and help guide future directions in research. Your responses will remain confidential. Your participation is completely voluntary and the parameters of each study will be defined for you should you decide to be involved. We hope you will register today! Visit http://globaldystoniaregistry.org/ to participate.
Accelerating Research & Inspiring Hope
The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.