People with Multiple System Atrophy face significant challenges learning about current research, especially given the rarity of the disease. Moreoever, patients often need extra help locating further support resources. The MSA Research Registry is designed as a way for patients and caregivers to connect with vital research opportunities worldwide and receive information about resources.
Note:
The two brain research apps are currently under review for further development. Stay tuned for re-launch of the new apps in 2024.
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.
Connect with the American Academy of Neurology (AAN) for Patient Information
Find A Movement Disorder Specialist in the International Movement Disorders Society (IMDS)
Find An Autonomic Disorders Specialist in the American Autonomic Society (AAS)
Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat diseases. Treatments might be new drugs or new combinations of drugs, new surgical procedures or devices, or new ways to use existing treatments. The goal of clinical trials is to determine if a new test or treatment works and is safe. Clinical trials can also look at other aspects of care, such as improving the quality of life for people with chronic illnesses.
The process for drug approval including different kinds of faster tracks is provided by the FDA here:Â https://www.fda.gov/drugs/development-approval-process-drugs
The best way to find out about drug trials and to notify the right people to let them know you are interested in participating in a drug trial is to register below for the Alliance’s research registry. We will get in touch with you and keep you updated on the latest MSA related research and support developments.
The best way to find out about drug trials and to notify the right people to let them know you are interested in participating in a drug trial is to register below for the Alliance’s research registry. We will get in touch with you and keep you updated on the latest MSA related research and support developments.
The latest information on current drugs in the pipeline and clinical trials is posted here:Â 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.
It is usually the case that drug trials are free for the participants. Sometimes also drug companies provide a stipend or cover the cost of travel to the clinical trial site as well.
Sometimes there is compensation in the form of a stipend or the company sponsoring the trial will cover the travel costs associated with participating in the trial.
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