Global MSA/AMS Research Registry Hub

People with MSA and related brain disorders face significant challenges finding support and learning about current research, especially given the rarity of the disease. Moreoever, patients often need extra help locating suitable resources. The Global Research Registry Hub is designed as a way for patients and caregivers to build supportive networks and to connect with vital research opportunities worldwide. The MSA Research Registry is now open for sign-ups. Scroll to the bottom of this page for further information.

 

Note:

The two apps are currently under review for further development. Stay tuned for a launch of the new apps in 2021.

 

   

Research Frequently Asked Questions (FAQ)

(More Coming Soon)

What is a clinical trial?

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.

What is the process for drug approval?

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

 

If I am a patient, how can I participate in a clinical trial?

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.

 

Do you have a list of clinical trials?

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.

 

Does it cost anything to participate in a clinical trial?

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.

 

Can I get paid to participate in a clinical trial?

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.

 

If I live outside of the US, how can I participate in a clinical trial?

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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Current Clinical Trials

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MSA RESEARCH REGISTRY & SUPPORT HUB


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