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Research Roundup: Opportunities to Participate at Home and in Person

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For some, the concept of research might be new or even intimidating. But many are pleased to learn that there are many ways to participate in research, whether you have Parkinson’s disease (PD) or not. Some studies measure health or collect information while clinical trials test a therapy or intervention to see if it works and is safe. Still some studies are conducted from the comfort of your home.

In this research roundup blog, we share some of the many studies in need of volunteers.
 

  • Landmark Study to Stop Parkinson’s: The Michael J. Fox Foundation’s (MJFF) Parkinson’s Progression Markers Initiative (PPMI) is on a mission to stop Parkinson’s disease. The study is recruiting people diagnosed with Parkinson’s in the past two years and not yet taking PD medication. Enrolling people early in their disease course allows volunteers to contribute valuable data over time to help plot disease biology and experience, from the earliest signs of Parkinson’s through its later stages. This information is invaluable for researchers working toward cures. If you're in the U.S. or Canada, call 877-525-PPMI or email joinppmi@michaeljfox.org to learn more and get started today. If you're outside the U.S. or Canada, reach out to a site near you to learn more.

    The online part of PPMI is open to anyone over age 18 in the United States. Join the study that could change everything.
  • Drug to Slow Disease by Lowering LRRK2 Activity: A long-watched Phase IIb trial has begun. In the LUMA study, Denali and Biogen are testing BIIB122 (formerly DNL151), a drug to lower activity of the LRRK2 protein and slow disease. Parkinson’s — with and without a mutation in the LRRK2 gene — is linked to higher LRRK2 activity. The LUMA study is testing safety and efficacy of BIIB122 in people diagnosed with Parkinson’s in the past two years and without a LRRK2 mutation. Three sites across the U.S. are enrolling. The partners’ LIGHTHOUSE study, in people recently diagnosed who do carry a LRRK2 mutation, will launch later this year. Learn more and contact a LUMA site near you.
  • Ketamine to Treat Depression in Parkinson’s: MJFF is funding a study testing ketamine — an anesthetic — to treat depression in Parkinson’s disease. (Estimates suggest up to 50 percent of people with Parkinson’s may experience depression. Watch a video on depression.) Yale University in New Haven, Connecticut is recruiting people aged 40 to 75 living with PD and symptoms of depression (e.g., low mood, decreased interest in previously enjoyable activities, feeling hopeless). Learn more about the study
  • At-Home Study to Measure Parkinson’s Disease: The pharmaceutical company Roche/Genentech is leading a study to understand the experiences of people with Parkinson’s disease and the use of smartphones and smartwatches to measure Parkinson’s symptoms. The study is recruiting people aged 45 to 75 diagnosed with Parkinson’s living in the U.S. and U.K. Volunteers will be interviewed via video call and given instructions on how to use a smartwatch and a smartphone with a pre-installed app. The watch and phone measure different aspects of how you move. Collecting this information can help scientists understand the symptoms and activity limitations experienced by people with PD and look for ways to better track disease progression. Learn more and contact the study team.
  • Home-Based Study to Prevent Fractures: People with Parkinson’s have a much higher risk of hip and other fractures due to walking issues or osteoporosis (thinning of the bone). The TOPAZ study (The Trial of Parkinson's And Zoledronic Acid) aims to reduce the risk of fractures in people with PD. The study is testing if zoledronate, also known as zoledronic acid (Reclast®), an FDA-approved medication for osteoporosis, can prevent fractures in people with Parkinson’s. Interested participants complete an online form and then may have a video screening visit. If eligible, a nurse will visit the volunteer’s home to give the study drug or placebo. The study aims to enroll 3,500 people with Parkinson’s across the U.S. Learn more about the study.

Want to learn more about participating in research? Read more on our website or watch a webinar.

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