World MSA Research Information Registry

- HOSTED BY USA BASED PARTNERING CHARITY, DEFEAT MSA ALLIANCE

People with MSA face challenges learning about research. The International Research Information Registry (hosted by our US partner, Defeat MSA Alliance) is a way for MSA community members to provide their contact information and other details, if they wish to be contacted about possibly participating in experimental drug trials and research studies.

Defeat MSA Alliance (USA), Defeat MSA Australia and its other MSA United Consortium partners continue to strongly advocate for more drug trials and a more equitable implementation of them worldwide. Although this informational registry is hosted by Defeat MSA Alliance in the US, it is available to anyone diagnosed with MSA (or any related disease) globally. It is completely voluntary and strictly confidential.

The purpose of this registry is to provide information. It does not register or enter you into a trial or treatment plan. In order to enter into any trial, receive any diagnosis or receive treatment, you must consult your licensed healthcare provider. We do not conduct drug trials. But we do continue to strongly advocate for more research, on behalf of our global MSA community.

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 bottom to register for research information.

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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.

MSA RESEARCH INFORMATIONAL REGISTRY


    Patient Address

    Patient Contact

    Diagnosis Information

    Medical Information

    Contact Information


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