MSA RESEARCH INFORMATION REGISTRY
People with MSA face challenges learning about research. The International Research Information Registry is a way for MSA community members worldwide 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 New Zealand 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 co-hosted by us along with our Canadian partner, but available to anyone diagnosed with MSA (or any related disease) globally. It is completely voluntary and strictly confidential.
The NZ Research Informational MSA Registry is compliant with all laws in New Zealand.
PATIENT RESOURCES
Defeat MSA New Zealand offers the links below to help you search for an appropriate specialist worldwide. These directories are provided for informational purposes by our international 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)
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?
In the main, New Zealand follows the US on the process for drug approval. The explanation of this process, including different kinds of faster tracks is provided by the Food and Drug Administration (FDA), indicated 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 on Defeat MSA NZ Trust’s research information registry.
We will get in touch with you and keep you updated on the latest MSA related research and support developments. We cannot sign you up for a trial but we can provide information about ongoing trials. And if you are interested in a trial which does not have a site in New Zealand, there have been multiple cases in which investigators in Australia, for example, who have accepted participants in NZ.
Lastly, we are constantly appealing for more drug trials in NZ, our residents are struggling just as much as anyone else is and we have a duty to advocate for our community in New Zealand.
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 on our charity’s research information registry. We will get in touch with you and keep you updated on the latest MSA related research and support developments. We also regularly update our community on drug trials in our consortium wide quarterly newsletter. (SUBSCRIBE HERE)
Does it cost anything to participate in a clinical trial?
In most cases, participation is any drug trial is free. But also sometimes the sponsoring pharmaceutical company will cover transport, provide a stipend or reimbursement for in-country travel.
Always consult our global consortium pipelines page: https://pipelines.msaunited.org/ for the latest information on the development of current MSA related drugs.
And always stay in touch with these pages in NZ for updates and make certain to register with our research information registry below.
Can I get paid to participate in a clinical trial?
As mentioned above, 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 a country where a trial is located, how can I participate in that 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, for example, for people traveling to Australia for a trial.
However, it is up to the decision of the pharma company, government regulators and the site investigator to decide whether to accept a patient from another country or province. So registering for the research information on trials is the first step.