WORLD MSA RESEARCH REGISTRY & SUPPORT HUB

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 2024.

Scroll down to register for research information.

Note:

The two apps (Apple and Android) are currently under review for further development.

PATIENT RESOURCES

Need A Doctor?

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)

International Movement Disorders Society (MDS)
National Institutes of Health Fact Sheet (NIH)
National Organization of Rare Diseases (NORD)
Orphanet (Non-US)
Europe Organisation of Rare Diseases (EURORDIS)
American Academy of Neurology (AAN)
Pub Med (US National Library of Medicine)
Global Database of Clinical Trials
FDA List of Approved Drugs
Michael J. Fox Foundation Clinical Trials Search

RESEARCH FREQUENTLY ASKED QUESTIONS (FAQ)

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: 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: 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.

GLOBAL MSA RESEARCH REGISTRY

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