What’s New in Parkinson’s: April 2022

Young woman getting eye exam looking through optical tools

The retinal age gap and Parkinson’s risk. The smallest DBS device ever developed. A World Parkinson’s Day flash mob. Neil Diamond’s music on Broadway. Here’s what’s new in the world of Parkinson’s this month.




PARKINSON’S SURVEYS, CLINICAL TRIALS, and volunteer opportunities

Pass to Pass Hikes for Parkinson’s – Pass to Pass is a nonprofit dedicated to raising Parkinson’s awareness while supporting hikers with Parkinson’s. This group of volunteers (and llamas!) offers multi-day backpacking and hiking trips on the Pacific Crest Trail in Washington, Oregon, and California. Participants are being recruited now for these exciting summer 2022 events. For more details and information, visit www.passtopass.org or contact Bill Meyer at 509-991-1212 or spokanebill@gmail.com.

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 goal of the study is 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. If you’ve been diagnosed with Parkinson’s, PSP, MSA, or CBD with mild, moderate, or severe speech disorders, you are encouraged to enroll. 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 a 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 systems of rehabilitation. This project aims to develop suitable game-based exercise experiences to help people living with Parkinson’s. If you are 45 or older, and 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 interests in games and gameplay in 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.

Do you have early-stage Parkinson’s? The Orchestra Study is a clinical research study to evaluate the use of an investigational medication called UCB0599 in men and women with early-stage Parkinson’s. You can learn more and see if you qualify here.

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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