International MSA Research Information Registry
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 participate in drug trials and research. The information registry is hosted by our US partner, Defeat MSA Alliance (USA), completely voluntary and strictly confidential.
Patient Resources
Need A Doctor?
Our American partnering charity, Defeat MSA Alliance, has offered these links below to help New Zealanders search for specialists. These directories are provided for informational purposes by our friends and allies.
Find A Movement Disorder Specialist in the International Movement Disorders Society (MDS)
Find An Autonomic Disorders Specialist in the American Autonomic Society (AAS)
Research Frequently Asked Questions (FAQ)
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.