What’s New in Parkinson’s: March 2023

Female neurologist evaluates therapy on a female patient

Inflammation as cause, not effect. Pathological proteins. TNFRSF10B as both biomarker and target. Roundworms for gut research. The latest on TCE and Parkinson’s. Here’s what’s new in the world of Parkinson’s this month.




PARKINSON’S SURVEYS, CLINICAL TRIALS, and volunteer opportunities

  • Staying Connected through Communication Study – The University of Washington SPEAC Lab invites individuals living with Parkinson’s to answer survey questions about their communication experiences. This is an online survey study that will take about 30-45 minutes. (Paper surveys are also available.) People with Parkinson’s and their family/friends/coworkers will complete SEPARATE surveys, and data are not shared between participants. This study is open to anyone in the U.S. Each participant will be mailed a $25 check upon survey completion. Learn more and enroll here.
  • PreActive PD Study – This study, available for both English and Spanish speakers, implements an occupational-therapist-delivered physical activity behavior change coaching intervention in people with early-stage Parkinson’s. The study is based upon a recent single-arm cohort feasibility study (Pre-Activate PD/HD) that evaluated acceptability, implementation, and resulting effect estimates of the Pre-Activate PD intervention in 13 participants. The intervention provides one-on-one coaching sessions from an occupational therapist to individuals newly diagnosed with Parkinson’s. The individualized structured support in the sessions is aimed at facilitating and optimizing exercise uptake as part of an effective self-management program. Learn more and enroll here.
  • Gamma Wave Trial – Sponsored by the Massachusetts Institute of Technology (MIT), this trial will investigate the efficacy of a non-invasive method of neuromodulation called Gamma Entrainment Using Sensory Stimulation (GENUS) for managing Parkinson’s motor symptoms. GENUS is administered via light, sound, and tactile stimulation devices and has been tested on cognitively normal individuals and individuals with mild Alzheimer’s, and the device was found to be safe for use and effective for entrainment in both populations. Learn more here.
  • YOPD Survey – A doctoral student in occupational therapy at Russell Sage College is conducting a research study to determine the impact of Young Onset Parkinson’s Disease on cognition, quality of life, and life roles. If you received a Parkinson’s diagnosis before age 60, you can learn more and complete the survey here.
  • Phoenix-Area Residents – Deep Brain Stimulation (DBS) and Exercise Study at Barrow Neurological Institute – This study aims to help researchers learn more about how aerobic exercise affects symptoms of Parkinson’s and the quality of life in people who have DBS. They will also look at brain wave activity using the Medtronic Percept DBS device in order to better understand what changes in the brain might be caused by exercise and how that affects Parkinson’s symptoms. Reach out to Markey if interested.
  • Colorado Oral Strengthening Device – The University of Colorado is looking for adults with Parkinson’s to participate in a research study exploring how a novel low-technology device can achieve an increase in tongue strength comparable to standard-of-care exercise using tongue depressors but with the kinematics and simple biofeedback of existing high-cost devices. Research has shown that tongue resistance exercises paired with biofeedback have resulted in improved tongue strength to support chewing, control of food and liquid in the mouth, and propulsion of material for a swallow. Learn more and enroll here.
  • PD GENEration – The Parkinson’s Foundation has announced a major expansion of its national study to make genetic testing and counseling more available for people with Parkinson’s. The study (NCT04057794) hopes to enroll 15,000 people in all 50 US states, Puerto Rico, and the Dominican Republic. Details are available here. For questions about enrollment, email genetics@parkinson.org. Know someone who speaks Spanish and wants to learn more and maybe participate in the study? Share this link.
  • Parkinson’s Progression Markers Initiative – In an expanded study, the Parkinson’s Progression Markers Initiative (PPMI) is currently working to enroll up to 100,000 people with and without Parkinson’s. The study team is especially seeking to enroll people diagnosed with Parkinson’s in the past two years and who are not yet on treatment, as well as people 60 and older who aren’t living with Parkinson’s but have a risk factor for it (such as a close relative with Parkinson’s, a known Parkinson’s-associated mutation, and/or REM sleep behavior disorder). The observational study is also enrolling people with no known connection to Parkinson’s to serve as a control group. Learn more here.
  • TOPAZ (Trial of Parkinson’s and Zoledronic Acid) – Caroline Tanner, MD, PhD, is recruiting participants for a new remote clinical trial led by a team of Parkinson’s experts at UCSF in partnership with researchers from across the country. The study aims to help people with Parkinson’s or parkinsonism maintain their independence by reducing the risk of hip fractures. The study will test if zoledronate, an FDA-approved medication for osteoporosis, can prevent fractures in people with Parkinson’s, whether or not they have osteoporosis. To learn more, visit the study website at TOPAZstudy.org, email TOPAZ@ucsf.edu, or call (415) 317-5748.
  • Join Google and LSVT in Project Euphonia – LSVT Global has partnered with Google on an exciting research project called Project Euphonia to help improve automatic speech recognition software for people with speech disorders. These disorders may make using devices like Google Home, The Nest, and other Smart devices, Siri, Alexa, or speech-to-text frustrating. To do this, LSVT Global needs samples of disordered speech to train the system. You are encouraged to enroll if you’ve been diagnosed with Parkinson’s, PSP, MSA, or CBD with mild, moderate, or severe speech disorders. Participation is easy, can be done from your own home, and can earn you a $60 gift card! Learn more here.
  • G2019S LRRK2 Parkinson’s: Increasing Awareness and Genetic Testing Program – This program aims to support the development of precision medicine intended to treat people with genetic forms of Parkinson’s. Up to 15% of cases of Parkinson’s disease have an underlying genetic cause, yet many people have never had genetic testing. This research program will be very important in supporting the future development of a new oral precision medicine treatment for one of the most common genetic forms of Parkinson’s, aimed at slowing its progression. To learn more, visit geneticpd.com.
  • A PD Avengers research group is undertaking a new project called Sparks of Experience, designed to be more systematic about collecting and considering the experiences and ideas that come from the curious minds of people living with Parkinson’s. “In the past, these sometimes quirky ideas inspired by lived experience have turned into significant new directions for research. It could be said we are trying to capture serendipity,” the team says. To learn more and get involved, see the flyer here
  • Game-based Exercise Project – Researchers at the University of Auckland are investigating how games can be used as potential rehabilitation systems. This project aims to develop suitable game-based exercise experiences to help people living with Parkinson’s. If you are 45 or older, living with a chronic condition such as Parkinson’s, and/or are experiencing age-related health conditions, you are invited to participate in a survey that will help the researchers to understand the community’s interests in games and gameplay in the context of exercise and rehabilitation. To learn more and take the 15-minute survey, see the flyer here
  • SPARX3 – A Phase 3 Clinical Trial about Exercise and Parkinson’s – This research team is currently seeking volunteers to participate in a clinical trial about the effects of aerobic exercise on people with Parkinson’s. Learn more and see if you qualify here. For more details, contact Katherine Balfany at SPARX3@ucdenver.edu.
  • PAIRing Up – If you are a person with Parkinson’s or a care partner to someone with Parkinson’s, you are invited to participate in an online survey to address neuropsychiatric (cognition, depression, anxiety) concerns in Parkinson’s. The survey aims to learn about the needs and priorities for clinical care, education, support, and research related to neuropsychiatric symptoms. To learn more and participate, click here to download the flyer. 
  • A multidisciplinary research team in the UK is investigating how to best use music to help people with Parkinson’s manage symptoms related to movement and mood. This includes research about music for dancing and is the first study to incorporate the new Dance Sophistication Index for people with Parkinson’s. To learn more and take a 30-minute survey, click here.
  • The University of Oulu and collaborators from Aalborg University, Fraunhofer University, the University of Manchester, the University of Glasgow, the University of Lisbon, and the University of Melbourne, are conducting a survey for people with Parkinson’s and Parkinson’s care partners about self-care. Complete the survey here to share your self-care strategies and techniques. You can also review ideas submitted by others and add them to your own self-care toolbox.
  • Home-based Exercise and Cognitive Behavior Therapy – University of Alabama in Huntsville
  • Speech and Telemedicine Study – The Purdue Motor Speech Lab
  • Parkinson’s and Service Dogs – University of Groningen, Netherlands
  • Neurology Study Interest Registry – University of Rochester
  • Park Test – University of Rochester

For more of what’s new in Parkinson’s news, check out our full series here


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