May was filled with Parkinson’s news, but most exciting for many people in the Parkinson’s community was that the United States Congress passed the National Plan to End Parkinson’s Act: the first-ever federal legislation dedicated to ending Parkinson’s.
The goal of this legislation is to “unite the federal government in a mission to cure and prevent Parkinson’s, alleviate financial and health burdens on American families, and reduce government spending over time.” Specifically, the legislation will create an advisory council that supports research, care, and services for the Parkinson’s community. The council will consist of members of federal agencies as well as people with Parkinson’s, care partners, clinicians, researchers, and other advocates.
Read on for more Parkinson’s research, therapies, and living well stories from May 2024.
SCIENCE AND RESEARCH NEWS
PARKINSON'S PATHOLOGY AND PATHOGENESIS
- A new study on genetic links between Parkinson’s and inflammatory bowel disease (IBD) found LRRK2 is associated with the co-occurrence of IBD and Parkinson’s. The study, published in Genome Medicine, identified additional associations as well.
- Another study exploring LRRK2 and Parkinson’s found that LRRK2 inhibition protects against Parkinson's-associated environmental toxicants by providing protection against dopaminergic neurodegeneration, neuroinflammation, and mitochondrial damage caused by certain toxins.
- A team of researchers led by Utkarsh Tripathi found that the phenotypes linked to PINK1 and PRKN mutations are different from phenotypes in other Parkinson’s mutations. The findings point to a unique link between these mutations that helps explain the varying mechanisms of Parkinson’s. PINK1 and PRKN are the most common genes linked to early-onset Parkinson’s.
- Findings from a brief report in Movement Disorders support the hypothesis that exposure to environmental toxins can cause Parkinson’s. The study showed higher instances of Parkinson’s and cancer than expected among attorneys who worked near a dry cleaning business in New York that leaked trichloroethylene (TCE) and other solvents into the soil.
- In other Parkinson’s-and-pesticides research, Dr. Brittany Krzyzanowski at the Barrow Neurological Institute in Phoenix published an observational study that also supports earlier evidence that the agricultural use of certain pesticides and herbicides may increase the risk of Parkinson's.
- Researchers at the University of Toronto have developed synthetic antibodies that may have the ability to enhance and produce dopaminergic neurons by targeting certain receptors within the Wnt signaling pathway. Preclinical results from a rodent model of Parkinson’s showed potential for restoring motor function and minimizing Parkinson’s-related motor symptoms.
- Findings from a study led by researchers at Autonomous University of Barcelona may lead to new therapies that can prevent the conversion of alpha-synuclein aggregates into the toxic amyloid fibrils that accumulate in people with Parkinson’s.
- A study published in Nature Human Behavior identified an “internal neural compass” that the human brain uses to orientate itself. The discovery may help experts better understand conditions such as Parkinson’s and Alzheimer’s, where spacial orientation can be impaired.
- Exploring how cognitive reserve (CR) impacts the effectiveness of telerehabilitation in people newly diagnosed with Parkinson’s, researchers found that CR may be able to both predict and boost the outcomes of telerehabilitation.
- In a study published in Nature Neuroscience, a researcher at the University of Southern California’s' Keck School of Medicine shared a discovery that may help delay the onset of Parkinson’s and Alzheimer's. Young-Kwon Hong, PhD, and his team have developed a drug that helps flush fluid and waste buildup from the brain.
- Researchers at BPGbio published a study in Scientific Reports that explains how the company’s new diagnostic panel, which combines a measurement of N-acetylputrescine--a novel biomarker for Parkinson’s--with three clinical features often seen in Parkinson’s: depression, loss of smell, and acting out dreams. This panel may significantly enhance the accuracy of Parkinson’s diagnoses and can improve risk assessment for Parkinson’s.
- A study published in npj Parkinson’s Disease aims to identify Parkinson’s subtypes by focusing on differences in Parkinson’s progression. The authors hope to help increase the statistical power of clinical trials.
PARKINSON'S TREATMENTS
- In a paper published in Ageing Research Reviews, researchers dug into the recent findings that suggest Type 2 diabetes mellitus/obesity drugs--such as Ozempic--may be effective treatments for Parkinson’s. “An increasing preclinical, clinical, and epidemiological literature suggests that select incretin mimetics may provide an effective treatment strategy, but ‘which ones’ for ‘which disorders’ and ‘when’ remain key open questions,” the scientists explain.
- Based on results from their newest study, researchers at Aarhus University state that exercise should be considered medicine for Parkinson's and should be prescribed as early as possible following a diagnosis.
- In the UK, Seamus Connolly has become the first outpatient to begin ProDuodopa treatment for Parkinson's. The treatment, in which a small automatic pump steadily releases medication into the bloodstream, combines two drugs (foslevodopa and foscarbidopa) and helps manage Parkinson’s symptoms by converting foslevodopa into dopamine.
- A neurosurgeon at Penn Medicine is the first to implant a Percept™ RC neurostimulator in a person with Parkinson’s. The device, which was recently approved by the US Food and Drug Administration (FDA), is designed to help control tremors and reduce epileptic seizures.
- In another first, researchers at Lund University recently implanted seven million lab-grown brain cells into a person with Parkinson’s. The stem cell therapy is designed to replace the dopamine-producing neurons that are lost due to Parkinson’s.
- A descriptive study in Sweden found that dancing--particularly as part of the Dance for Parkinson’s Disease program--provides not only physical benefits to people with Parkinson’s and their families but emotional benefits as well.
- Data from a small study in Brazil showed that a six-week Pilates program helped reduce bradykinesia of the upper limbs in people with Parkinson’s.
- A two-week, open-label study found that continuous delivery of carbidopa/levodopa via the DopaFuse system was associated with reduced OFF time compared to standard oral carbidopa/levodopa treatments.
- Findings from a pilot study suggest that staged bilateral FUS-STN is a safe and effective treatment for Parkinson’s. The data did show “mild but persistent” speech-related adverse effects among a small number of participants.
- Healthcare innovation company Enable Injections and biotech company Serina Therapeutics will partner to develop and commercialize SER-252 in combination with the enFuse® wearable drug delivery platform for the treatment of Parkinson’s.
- A rat model study of Parkinson’s found that black phosphorus’s anti-inflammatory capacity minimized Parkinson’s symptoms in rodents, suggesting that it may be a potential treatment.
- In a study published in Developmental Cell, scientists at the University of California, Santa Barbara identified a new connection between ZIP7 (an ion transport protein) and a cell’s proteasome, which serves as a “garbage disposal” and breaks down misfolded proteins. The discovery offers a new target for treating degenerative conditions like Parkinson’s.
- Researchers at the Uhlan National Institute of Science and Technology (UNIST) in South Korea have developed a biodegradable “bio-paper” implant that adheres to the brain and can deliver wireless electrical stimulation to treat Parkinson’s symptoms.
- PhotoPharmics is currently enrolling people with Parkinson’s in a pivotal trial of its phototherapy device called Celeste, which is designed to improve Parkinson’s motor and non-motor symptoms, as well as overall quality of life.
- Evidence from a retrospective study suggests that vestibular rehabilitation may help people with Parkinson’s improve their balance. The researchers noted that additional studies are needed to confirm this benefit.
- A study published in Annals of Neurology found that although high levels of caffeine intake can promote dopamine transporter down-regulation in people with Parkinson’s, caffeine had no significant impacts on motor function.
- Another study exploring the associations between coffee and Parkinson’s supports previous research, finding that people who drink coffee have a lower risk of developing Parkinson's. Published in Neurology, the study analyzed data from 184,024 individuals across an average of 13 years and, along with other findings, found that the primary metabolites of caffeine, paraxanthine, and theophylline in the blood had an inverse association with the risk of developing Parkinson's.
- Aspen Neuroscience has been awarded a CLIN2 grant award of $8 million from the California Institute for Regenerative Medicine (CIRM) to help advance the development of ANPD001, an investigational iPSC-derived dopaminergic neuron replacement therapy for Parkinson’s.
- A cohort study published in npj Digital Medicine found that exercising on a regular basis throughout the week is as effective in reducing Parkinson’s risk as “weekend warrior” workouts.
- The Swedish Medical Products Agency has approved the initiation of a Phase I clinical study of IRLAB Therapeutics’ drug candidate IRL757, which is designed to help manage Parkinson’s-related apathy.
- In npj Parkinson’s Disease, researchers explore the current landscape of the clinical outcomes assessments used in Parkinson’s clinical trials. They also highlight recent progress in this area, define priorities for future research, and advocate for increased diversity in Parkinson’s research.
- A study published in Redox Biology suggests that CBN--a cannabinoid like CBD and THC but milder and less psychoactive--has potential in treating neurological conditions such as Parkinson’s.
- In other cannabis news, clinicians in Canada published a paper in the Journal of Parkinson's Disease with their advice to people with Parkinson’s about the use of cannabis products.
- As research continues to suggest that the gut is as important in the development of Parkinson's as the brain, scientists at Queensland University of Technology are focusing their research efforts on treatments that target the gut.
OTHER NEWS
- In an effort to improve quality of life, through their new ParkProReakt project, researchers at the Fraunhofer Institute for Applied Information Technology (FIT) aim to develop a digital platform and app that, combined with wearables, can track the course of a person’s Parkinson’s.
- A study published in Heliyon found that deficits in emotional processing are likely the reason some people with Parkinson’s have difficulty recognizing emotions on human faces.
- Researchers in China found an association between clinically significant anxiety and slower gait in people with Parkinson’s. The study, published in the Journal of NeuroEngineering and Rehabilitation, suggests that treating anxiety in people with Parkinson’s may help improve their walking abilities at the same time.
- Emory University shared a tribute to Mahlon DeLong, MD, Professor Emeritus and former chair of the Department of Neurology in the Emory University School of Medicine, whose career was dedicated to Parkinson’s research and whose work helped pave the way to new treatments, including DBS.
LIVING WELL STORIES
- Todd Vogt, who was diagnosed with young onset Parkinson’s at age 43, will represent Team USA in mixed doubles rowing at the 2024 Summer Olympics in Paris.
- A recent symposium in Nigeria that focused on Parkinson’s care and awareness emphasized the importance of community, dialogue, and holistic treatments.
- Riding a specialty tricycle borrowed from our own Davis Phinney, Bill Bucklew is cycling across the United States to raise awareness of Parkinson’s.
- Likewise, four friends living with Parkinson’s recently completed a bike ride across Arizona to support Parkinson’s awareness. “I could just sit down on a couch at home and just think about things, or I can get out there and try something,” one of the riders said.
- Davis Phinney Foundation Board of Directors member Soania Mathur, MD, shared stories about her Parkinson’s experiences as a guest on the CBC’s White Coat, Black Art.
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, perimeopausal, 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 [email protected]. 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 [email protected], 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 [email protected].
- 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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