By completing your profile, your information will be utilized to move forward research and clinical trials that could lead to future treatments and cures for dystonia!
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.
Protecting patient data, while providing diverse stakeholders with broad access to the aggregated information, is our top priority. This registry is managed by our partners at Invitae in a rigorous manner to allow compliance with HIPAA and FISMA data and patient protection laws.
We believe that research advances can be made made faster when data collection is standardized and patients participate.
The American College of Medical Genetics (ACMG) recently stated that the sharing of de-identified genetic data is "crucial" to the advancement of personalized medicine. The ACMG joins the American Medical Association (AMA), the National Society of Genetic Counselors (NSGC), and other professional societies in making this strong practice recommendation.
For questions: email Coordinator@globaldystoniaregistry.org
Visit DMRF website: dystonia-foundation.org
By completing your profile, your information will be utilized to move forward research and clinical trials that could lead to future treatments and cures for dystonia!
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.
Protecting patient data, while providing diverse stakeholders with broad access to the aggregated information, is our top priority. This registry is managed by our partners at Invitae in a rigorous manner to allow compliance with HIPAA and FISMA data and patient protection laws.
We believe that research advances can be made made faster when data collection is standardized and patients participate.
The American College of Medical Genetics (ACMG) recently stated that the sharing of de-identified genetic data is "crucial" to the advancement of personalized medicine. The ACMG joins the American Medical Association (AMA), the National Society of Genetic Counselors (NSGC), and other professional societies in making this strong practice recommendation.
