The Dystonia Coalition is a collaboration of scientists, institutions, patient advocacy organizations and the National Institutes of Health, all united to advance clinical research for dystonia. The Bachmann-Strauss Dystonia & Parkinson Foundation is proud to be a working partner of the Coalition.
For more information on the Dystonia Coalition visit http://rarediseasesnetwork.epi.usf.edu/dystonia/.
A Community Partner for Clinical Trails
Clinical Trial Recruitment Community Partners is an organization that serves Parkinson's patient, researcher and physician communities. Community Partners strives to raise awareness about the importance of trial participation and to educate about clinical trial opportunities. The goal of the Community Partners Program is to bring together the key stakeholders, such as The Michael J. Fox Foundation in the trial participation process to organize outreach, messaging and activities related to trial participation.
Here is the link for the Fox Trail Finder website: https://foxtrialfinder.michaeljfox.org.
The Global Dystonia Registry supports 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. This Registry compliments the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort. Your participation is confidential and completely voluntary and the parameters of each study will be defined for you should you decide to be involved.
We hope you will register at www.globaldystoniaregistry.org.