Defeat MSA Alliance
Defeat MSA Alliance
Defeat MSA Alliance
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29924 Jefferson Avenue
Saint Clair Shores, MI, 48082
Ph: +1-855-542-5672 | +1 (855 KICK-MSA)

World MSA Research
Information List

Stay Informed & Register Your Interest in MSA Research OpportunitiesPeople living with Multiple System Atrophy (MSA) and their families can sometimes find it difficult to learn about research studies and clinical trials that are seeking participants.

The MSA Research Information List provides a way for members of the MSA community to receive information about research studies, clinical trials and other research opportunities that may be seeking participants.

Defeat MSA Alliance (USA), together with its MSA United Research Consortium partners, strongly advocates for increased MSA research, more clinical trials and greater access to research opportunities around the world.

Registering your interest on MSA Research Information List is completely voluntary and confidential. When Defeat MSA Alliance or MSA United becomes aware of an appropriate research opportunity, information about that opportunity may be distributed to individuals on the list.

Defeat MSA Alliance and MSA United do not enroll participants in research studies or clinical trials, determine eligibility for participation, or recruit individuals for studies.

If you receive information about a study that interests you, you may choose to contact the research site directly using the information provided. Participation and eligibility are determined solely by you and the researchers conducting the study.

Joining this list does not register or enroll you in a research study or clinical trial.

REGISTER FOR RESEARCH INFORMATION LIST BELOW

Research Information List Registry

  • Patient Information

  • Patient Address

  • Diagnosis Information

  • MM slash DD slash YYYY

  • Medical Information

  • Contact Information

    Contact information of person completing this form.
Register Below

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.

 

Click to Locate Movement Disorder Specialist in the International Movement Disorders Society (MDS)

 

Click to Locate Autonomic Disorders Specialist in the American Autonomic Society (AAS)

ORPHANET

European Rare Disease Organization (EURORDIS)

American Academy of Neurology (AAN)

PUB MED – MEDICINE RESOURCES

International Movement Disorders Society (MDS)

National Institutes of Health Fact Sheet (NIH)

National Organization of Rare Diseases (NORD)

NYU DYSAUTONOMIA CENTER

Clinician Trials Listing

 

Food and Drug Administration

Fox Finder – Search for Drug & Research Trials

CURRENT DRUGS IN PIPELINE - DRUGS IN DEVELOPMENT

Research Frequently Asked Questions

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://pipelines.msaunited.org/

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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