Parkinson’s Clinical Trials Roundup: Why Clinical Trials Matter for Parkinson’s and the Vital Role Participants Play

Carey Hidaka (right) with his wife Betsy

"There is a parallel between the Parkinson's Precision Medicine Initiative [PPMI] and what the Apollo program accomplished in bringing people to the moon," said Carey Hidaka, a study participant in PPMI and a member of its Community Advisory Board.

Like the moon mission, clinical studies have a bold goal - to find a cure and wipe out Parkinson's in our lifetime. To do this, different players must come together. Researchers who study Parkinson's create the foundational knowledge for ideas that will eventually benefit patients. Investors and companies ferry promising therapeutics through various stages of development and clinical trials. Funders and conveners like The Michael J. Fox Foundation help de-risk targets, bring stakeholders together and champion therapies on behalf of people with Parkinson's and their families.

However, none of this would be possible without volunteers like Carey and countless others who have joined Parkinson's research studies around the world, including PPMI. The Foundation launched PPMI as an observational study to understand how Parkinson's changes over time - knowledge that is fundamental for designing effective treatments and clinical trials.

"We need to get more people educated and involved," shared Art Gregoire, another member of PPMI's Community Advisory Board.

Progress relies on participation. Art does not have Parkinson's but lives with REM sleep behavior disorder (RBD) and smell loss, which can be early signs of Parkinson's.

Like Art or Carey, you can participate in Parkinson's research. Clinical trials are not just limited to those with Parkinson's but include people who are at-risk, as well as others without Parkinson's who can serve in control groups.

Keep reading to learn about opportunities for you or your loved one.

MJFF Clinical Studies and Resources

• Genetic Screening for Parkinson's: Parkinson's is not the same for everyone, and understanding those differences is key to improving treatment. MJFF's landmark study, PPMI, offers genetic screening to people with Parkinson's who have a family history of the disease or who have Ashkenazi Jewish ancestry. This screening looks at two genetic variants associated with Parkinson's disease that are found on the LRRK2 and GBA genes. These changes are rare in the general population but are more common in certain groups. Learn more: michaeljfox.org/freekit.
• Smell Loss and Parkinson's: Smell loss can be an early sign of Parkinson's risk. PPMI is offering free scratch-and-smell tests to anyone age 40 and up, with and without Parkinson's. Request a free test today and help scientists learn more about brain disease: mysmelltest.org/mjff.   
• Fox Trial Finder: This free and easy tool helps people discover clinical trials based on their unique health profile and interests. If you want to participate in research but are not sure which studies you qualify for, start here to find opportunities that match you: https://www.michaeljfox.org/trial-finder.
• How to Participate in Parkinson's Research: Visit MJFF's hub for what you need to know about joining a clinical study, including digital guides in multiple languages: https://www.michaeljfox.org/your-role-parkinsons-research.

Additional Studies to Consider

• Do you have mild motor symptoms and are taking Levodopa for your Parkinson's? Roche's Phase III PARAISO study is testing prasinezumab, a potential disease-modifying therapy for people with Parkinson's who are taking a stable dose of levodopa. The study is evaluating whether prasinezumab, given through IV infusion, can help slow disease progression. The therapy is designed to target clumps of alpha-synuclein (a protein closely linked to Parkinson's disease) and prevent these clumps from spreading so the body's immune system can clear them. The study will enroll 900 volunteers.
• Do you have Parkinson's symptoms that come and go between medication doses? Appello Pharma's Phase II study is testing an investigational treatment called AP-472. The study is for people with Parkinson's who take levodopa but still have changes in their movement symptoms throughout the day. The researchers want to see if adding AP-472 to levodopa can lengthen the amount of time when symptoms are better controlled. The study will enroll 150 volunteers.
• Are you or a loved one living with Lewy body dementia? Acadia Pharma's Phase II study is testing ACP-204 in adults with Lewy body dementia who may be seeing or sensing things that are not there (hallucinations) or believing things that may not be true (delusions). The study is evaluating the safety and effectiveness of ACP-204 at reducing these symptoms and will enroll 180 volunteers.

About the "Parkinson's Clinical Trials Roundup"

This series is a one-stop-shop for people who are interested in joining studies but are unsure where to start. It is an evolution of our previous "Research Roundup" articles. You'll find resources and tips for deciding whether to join a study, as well as links to active Parkinson's studies in need of volunteers.

• Linda Huynh, Ph.D.

  Lead Research Editor