Connecting researchers with those living with dystonia

The Global Dystonia Registry

Dysphonia International s proud to be part of the first-ever patient registry devoted to focal dystonias. The Global Dystonia Registry is designed to collect data on persons affected by a focal dystonia(s), including spasmodic dysphonia, to assist in future research efforts and clinical trials.

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. This Registry compliments the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort.

Your responses will help us better understand the dystonia experience and help guide future directions in research. Please know 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.

To date, over to 6,500 people have registered from over 60 countries. This is a collaboration between dystonia patient organizations, including Dysphonia International, and the research leaders of the Dystonia Coalition. We hope you will register today!