Research Registry – MSA United

WORLD MSA RESEARCH REGISTRY & SUPPORT 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 MSA 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 Registry is now open for sign-ups.

Scroll down to bottom to register for research information.

Note:

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

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 Neurologist in the American Academy of Neurology (AAN)

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)

Autonomic Disorders Consortium

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)

(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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WORLD MSA RESEARCH REGISTRY & SUPPORT HUB

Scroll down to bottom to register for research information.

PATIENT RESOURCES

Need A Doctor?

RESEARCH FREQUENTLY ASKED QUESTIONS (FAQ)

(More Coming Soon)

FILE DOWNLOADS

(STAY TUNED FOR UPDATE SOON)

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Section B

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CURRENT CLINICAL TRIALS

(STAY TUNED FOR UPDATE SOON)

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INFORMATION ABOUT CLINICAL TRIALS PROCESS

(STAY TUNED FOR UPDATE SOON)

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MSA RESEARCH REGISTRY & SUPPORT HUB

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