Participate in MSA ResearchPartner for a Cure: MSA Patient Volunteers and Research Funds are Urgently Needed
How To Participate In Multiple System Atrophy Research
Since multiple system atrophy is a rare disease, patient participation in existing research programs is critical to making progress. From better understanding of the disorder and tools for earlier diagnosis, to disease modifying treatments and hopefully a cure, research can take longer or even fail due to lack of volunteer patient subjects for studies.
- Watch the video on the right for a greater understanding of what happens in a clinical trial.
- Scroll down this page to see 3 ways to participate in and support multiple system atrophy clinical trials.
Learn What to Ask When You’re Interested in a Clinical Trial from this FAQ guide provided by Takeda Pharmaceuticals
1. Register in the Global MSA Registry (GLOMSAR)
For current MSA patients in all countries. It is very important to register!
It is very difficult to identify enough patients with a rare disease for research trials if they are not registered with a site that can dynamically identify patients meeting the research trial requirements. Glomsar not only allows you to share your information for future research studies but will also inform you of any research study or clinical trial for which you may qualify.
2. Stay Informed of Active MSA Clinical Trials and Volunteer if Possible.
While opportunities to participate in clinical trials for MSA are limited, it is important to check these resources regularly. Listed clinical trials will have enrollment criteria and may be restricted to certain geographical locations.
Not sure what to look for in a clinical trial?
- Read this information from the NIH: What are Clinical Trials and Studies?
- Watch this informative video: Helping you understand clinical trials
Note: Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about a study, you or your doctor may contact the study research staff via the contacts provided at the clinical trials website.
3. Consider donating or fundraising to increase our Dedicated MSA Research Fund
Make a greater impact in the fight against MSA!
- Become a monthly donor and earmark your gift to the MSA Coalition Research Fund.
- Include the MSA Coalition in your will.
- Create an easy fundraiser page and share with family, friends and colleagues.
4. Consider Brain Donation to Help Pinpoint The Cause Of Multiple System Atrophy
We encourage you to learn about brain donation. This important act of kindness will have a profound impact on the ability of researchers to better understand MSA and to someday find a cure.