People with MSA face challenges learning about research. The International Research Information Registry is a way for MSA community members to provide their contact information and other details, if they wish to be contacted about participating in experimental drug trials and research studies.
Defeat MSA Alliance (USA) and its MSA United Consortium partners continue to strongly advocate for more drug trials and a more equitable implementation of them worldwide. This informational registry is hosted by Defeat MSA Alliance (USA) but available to anyone diagnosed with MSA (or any related disease) globally. It is completely voluntary and strictly confidential.
Note:
The two research registry applications (Apple & Android) developed in 2020, are currently under review for further development. Stay tuned for re-launch of the redesigned apps in 2025.
Note:
The two apps (Apple and Android) are currently under review for further development.
Defeat MSA Alliance offers the links below to help you search for an appropriate specialist. These directories are provided for informational purposes by our friends and allies.
Find A Movement Disorder Specialist in the International Movement Disorders Society (IMDS)
Find An Autonomic Disorders Specialist in the American Autonomic Society (AAS)
The process for drug approval including different kinds of faster tracks is provided by the FDA here: https://www.fda.gov/drugs/development-approval-process-drugs
The latest information on current drugs in the pipeline and clinical trials is posted here: https://defeatmsa.org/msa-research/pipelines/
But always stay in touch with these pages for updates and make certain to register with the research registry below.
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