What’s New in Parkinson’s: March 2024

27 March 2024

March’s news highlights include a study that found slower progression for those who participate in research studies, more evidence of accuracy of alpha-synuclein skin biopsies, information about coffee, and the launch of an exciting new study focusing on the experience of women living with Parkinson’s.

Read on for the rest of March’s news!

SCIENCE AND RESEARCH News

Parkinson’s Pathology and Pathogenesis

  • In npj, Beaulieu-Jones et al. report that Parkinson’s progression for over 37,000 people participating in two studies, the Harvard Biomarkers Study and the Fox Insights trial, tended to be slower than Parkinson’s progression for over 170,000 people who weren’t participating in those studies. The researchers note that the reasons for the difference is unclear, but they suggest multiple ways in which selection-bias may be a factor. People in the two studies tended to be younger at age of diagnosis and to have started taking medication earlier.
  • JAMA Neurology features more evidence of alpha-synuclein skin biopsy tests accuracy in identifying people living with Parkinson’s. The full report from Gibbons et al. is behind a pay-wall, but there are also news articles about this research.
  • Nature Communications features a report from Akhmadi et al. about investigations into the functions of the DJ-1 gene. DJ-1 is among the genes associated with young-onset Parkinson’s and familial/inherited Parkinson’s.
  • In a study involving worms, both depleting b12 and increasing levels of the fatty acid propionate protected neurons from alpha-synuclein induced injuries. The study highlights interesting findings related to functions of b12 and propionate related to cellular activities involved in Parkinson’s. The study also reports that propionate can bind to G protein receptors, which are also associated with an ongoing trial of CVN-424.

Parkinson’s Treatments

  • While not focused only on Parkinson’s, Xiao et al. write about possible mechanisms and therapeutical potential of nutrition interventions in a variety of diseases.
  • Vaxxinity has had early success in a phase 1 trial of UB-312. The new treatment showed evidence of successful binding to aggregates of abnormal alpha-synuclein but “almost no binding to normal, monomeric alpha-synuclein.”
  • Curasen has had success in a phase 2a trial for a new treatment aimed at improving cognitive function for people with Parkinson’s and Alzheimer’s. The trial was small, and more research is needed, but improvements were seen in memory, attention, executive function, and impulse control.
  • Terada et al. report that in a small study of 16 people with Parkinson’s, neuroinflammation continued after initiation of Parkinson’s medication, but that participants who took zonisamide along with other Parkinson’s medications may have experienced some neuroinflammation protection. The authors also report that zonisamide may also help improve attention.
  • Researchers Laat et al. report on their findings related to benefits of intense exercise that may be detectable in imaging studies.

Other News

  • A report from Kruse et al. in Movement Disorders describes care resource utilization rates and difficulties related to treating advanced Parkinson’s in five European countries.
  • Johnston et al. discuss progress using AI to identify candidates for drug-repurposing that might help treat dyskinesia.  
  • New research provides more insight into associations between coffee consumption and lower risk of being diagnosed with Parkinson’s. Zhao et al. found that this association is related to caffeine and its metabolites, paraxanthine and theophylline. The authors note that this research pertains to prodromal phases of Parkinson’s and that they did not evaluate effects of coffee and caffeine consumption after diagnosis. Moreover, they note that due to possible side-effects, questions remain about whether caffeine supplementation is advisable for those at higher risk of developing Parkinson’s.
  • In npj, Chang et al. describe AccessPD, a new registry aiming to accelerate Parkinson’s research.

LIVING WELL STORIES

SURVEYS, CLINICAL TRIALS, AND VOLUNTEER OPPORTUNITIES

  • The University College Cork, Ireland and My Moves Matter have launched a study investigating women’s experiences of living with Parkinson’s, including the relationship between of Parkinson’s symptoms, medications, and menstruation. This study is open to women with Parkinson’s who are still menstruating as well as those who are pregnant, peri-meopausal, menopausal, or postmenopausal.
  • Asklepios Biophamaceutical, Inc. plans a Phase 2 study, REGENERATE-PD, to evaluate a gene-therapy candidate called AAV2-GDNF.
  • A 40-person, open label study will investigate a new treatment candidate to help with Parkinson’s dementia.
  • Russell Sage College Doctor of Occupational Therapy candidate Emily Peters is conducting a survey as part of her research into development of Parkinson’s symptom management resources. Participating involves following a symptom management protocol for two weeks and completing a survey.
  • Charco Neurotech is planning to expand availability of their CUE1 device; they are conducting a survey to evaluate market pricing. Over 3,000 people have used the CUE1, and nearly 90% of users experienced improvement in their Parkinson’s symptoms.
  • University of Hawaii’s Digital Health Lab is recruiting participants for two trials assessing keyboard and mouse movements to determine whether these systems can help with Parkinson’s diagnosis and symptom monitoring.
  • A team at The University of Calgary is using a new technology to sample and compare the microbiome of people with Parkinson’s to the microbiome of people without Parkinson’s.
  • The University of British Columbia is exploring efficacy of the Mediterranean diet as an intervention for Parkinson’s.
  • A study in London explores the effect of ballet dancing on motor and non-motor symptoms of Parkinson’s.
  • Zydus Lifesciences received approval to begin a phase II trial of an NLRP3 inhibitor for people with Parkinson’s. NLRP3 inhibition is thought to work against neuroinflammation.
  • Researchers in the UK and Australia began recruiting participants for a trial aiming to prevent people with REM sleep behavior disorder from developing Parkinson’s by reducing inflammation.
  • Researchers in Sweden will begin recruiting participants for a trial of montelukast versafilm: a drug used to treat asthma and allergies. The research will explore whether montelukast has a neuroprotective effect.
  • Texas Tech in Lubbock, Texas is undertaking a study about the effects of Parkinson’s on family functioning.
  • Researchers in Holland are enrolling participants in a trial evaluating the use of motivational smartphone apps to increase exercise program adherence.
  • Inhibikase is recruiting participants for a phase 2 trial of a new c-Abl tyrosine kinase inhibitor. In a press release, Inhibikase says their research “has validated the critical role that c-Abl plays in the initiation and progression of Parkinson’s disease, as well as the potential of IkT-148009 as a promising new approach to disease modification.” This trial is among the first to utilize recently validated alpha-synuclein seed assay tests.
  • The International Parkinson and Movement Disorders Society (MDS) is developing a new electronic diary (e-Diary): a digital solution for Parkinson’s. This e-Diary is intended to better characterize how the disease affects daily life. The MDS invites people to participate in a survey to help aid the design of this new tool.
  • A new trial studying Gemfibrozil–a drug that decreases fat production in the liver–is set for a phase two clinical trial in people with Parkinson’s. This trial will enroll people between 40 and 75 years of age who have not begun taking medication for Parkinson’s.
  • The Speech Accessibility Project (SAP) seeks volunteers for a research initiative aiming to make voice recognition technology more useful for people with diverse speech patterns. More information is available here and here. To determine your participation eligibility, visit the SAP registration page.
  • A team of Dutch researchers created PregSpark, a registry for women with Parkinson’s who are pregnant or have recently given birth. The goal is to build an online international pregnancy and Parkinson’s registry. This registry will prospectively and uniformly collect data on the course and outcome of as many as possible pregnancies in women with Parkinson’s. The data will help women with Parkinson’s make informed decisions about pregnancy and improve the quality of care pregnant women with Parkinson’s receive. The PregSpark site is under construction.
  • A phase 1b trial is recruiting volunteers for a study of a treatment aiming to influence inflammation.
  • Researchers in Norway are investigating the efficacy of ambroxol in people with dementia with Lewy bodies.
  • Researchers in the UK, in partnership with the Women’s Parkinson’s Project and MyMovesMatter invite participation in a survey about the experience of menopause for women with Parkinson’s.
  • Another study of ambroxol is launching: The DUPARG study is recruiting participants in Groningen, Netherlands.
  • A new trial examining the possible neuroprotective effect of exercise has been listed by the University of Nevada.
  • University of Rochester Center for Health + Technology is undertaking a survey study to assess the ability of the Parkinson’s Disease-Health Index to measure patient-relevant changes in disease burden over the course of two years. Participants will complete surveys five times over two years and must be over 18, speak English, and have a self-reported or clinical diagnosis of Parkinson’s. More information is available here.
  • Researchers at Columbia University’s Irving Medical Center are seeking participants for a study exploring the role of immune response in Parkinson’s. Participation is open to those with and without Parkinson’s and will involve donating blood, a questionnaire, a cognitive test, and a neurological examination. Click here to express interest in participating.
  • Johns Hopkins University has announced a trial to evaluate whether levetiracetam can improve symptoms of Parkinson’s psychosis. The trial is not yet recruiting, but intends to begin by September. The trial design features a crossover assignment, meaning every participant will receive an active trial drug for their participation.
  • The LUMA trial continues to recruit participants. This trial aims to assess the safety and efficacy of BIIB122 tablets in slowing the progression of early-stage Parkinson’s. This study has sites in the US, China, France, Germany, the Netherlands, Poland, Spain, and the UK.
  • The ACTIVATE trial is recruiting participants for a phase 2 trial of BIA 28-6156 in people with GBA mutations. This 78-week trial has site locations in the US, Canada, and Europe.
  • In Colorado, a study the Foundation is funding continues to recruit participants. The study explores low-load resistance training with blood flow restriction to help develop exercise interventions for improved quality of life for people with advanced Parkinson’s.
  • Washington University School of Medicine is sponsoring a study aiming to enroll participants with idiopathic REM sleep behavior disorder, as well as healthy controls, in preparation for a trial of neuroprotective treatments against synucleinopathies.
  • A study in South Carolina hopes to identify brain biomarkers to predict the risk of cognitive change following DBS surgery.
  • A survey in Ireland seeks to understand the influence of Parkinson’s symptoms and other factors on quality of life.
  • Another survey for those in Ireland seeks to understand how people access information about Parkinson’s.
  • A trial sponsored by the University of Aberdeen in Scotland is recruiting participants for a study of the effects of constipation and changes in the microbiota in Parkinson’s.
  • 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 US. Participants will be mailed a $25 check upon survey completion.
  • 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.
  • Gamma Wave Trial: Sponsored by the Massachusetts Institute of Technology (MIT), this trial investigates 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; the device was found to be safe for use and effective for entrainment in both populations.
  • 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 to better understand what changes in the brain might be caused by exercise and how that affects Parkinson’s symptoms. Phoenix-area residents reach out to Markey if interested.
  • Colorado Oral Strengthening Device: The University of Colorado Denver is looking for adults with Parkinson’s to participate in a study exploring how a novel low-technology device can increase 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 result in improved tongue strength to support chewing, control of food and liquid in the mouth, and propulsion of material for a swallow.
  • PD GENEration: The Parkinson’s Foundation announces 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. 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.
  • 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.
  • 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 interest 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.
  • 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 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.
  • 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

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

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