Research Registry - Defeat MSA Alliance

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.

Research Information Registry

Person Completing This Form(Required)
Connection to MSA(Required)
Patient Information
First Name(Required)
Last Name(Required)
Home Phone Number(Required)
Mobile Phone Number
Patient Address
Address(Required)
Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country
Diagnosis Information
Diagnosis(Required)
Diagnosis Date(Required)
MM slash DD slash YYYY
Doctor and Office/Practice/Institution of Diagnosis
Medical Information
Current Physician Name and Contact Email and Phone(Required)
Power of Attorney Name, Address, Telephone and Email Address
Contact Information
Contact information of person completing this form.
Email Address(Required)
First Name(Required)
Last Name(Required)
Interested In:
- Clinical Trials (such as drugs and investigational)
- Research Updates
- Volunteer for Medical Education Programs
- Interested in Brain Donation
- Volunteer to Help Research Fundraising
- Volunteer for Helping Charity Obtain Grants
- Volunteer to Support Other Patients and Caregivers
- Subscribe to Newsletter
CAPTCHA

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)

ORPHANET

European Rare Disease Organization (EURORDIS)

American Academy of Neurology (AAN)

National Institutes of Health Fact Sheet (NIH) Fact Sheet

International Movement Disorders Society (MDS)

National Institutes of Health Fact Sheet (NIH)

National Organization of Rare Diseases (NORD)

Autonomic Disorders Consortium

Clinician Trials (FDA) Listing

Food and Drug Administration

Fox Finder – Search for Drug & Research Trials

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?

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.

Cart review

World Research
Information Registry

Research Information Registry

Patient Information

Patient Address

Diagnosis Information

Medical Information

Contact Information

Patient Resources

Need a Doctor?

Current Drugs and Therapies Pipeline Information

Research Frequently Asked Questions

What is a clinical trial?

What is the process for drug approval?

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

Do you have a list of clinical trials?

Does it cost anything to participate in a clinical trial?

Can I get paid to participate in a clinical trial?

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

Supporters

Cart review

World Research Information Registry

Research Information Registry

Patient Information

Patient Address

Diagnosis Information

Medical Information

Contact Information

Patient Resources

Need a Doctor?

Current Drugs and Therapies Pipeline Information

Research Frequently Asked Questions

What is a clinical trial?

What is the process for drug approval?

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

Do you have a list of clinical trials?

Does it cost anything to participate in a clinical trial?

Can I get paid to participate in a clinical trial?

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

World Research
Information Registry