Hearing loss, epilepsy, and Parkinson’s. Machine learning and treatment targeting. An Ambassador’s award for optimism. “Clueless” proteins. Mustard seed fusion. Llamas and Parkinson’s (and not just as hiking buddies). Here’s what’s new in the world of Parkinson’s this month.
- A study published in the Journal of Parkinson’s Disease found that the presence of phosphorylated alpha-synuclein on the skin distinguishes people with Parkinson’s from those with symptoms of other parkinsonisms. The discovery could lead to earlier and more accurate diagnoses.
- Researchers at La Jolla Institute for Immunology in California have found that people with Parkinson’s have memory T cells with a very specific gene signature. Their research suggests that these genes may target alpha-synuclein and potentially cause ongoing Parkinson’s-related inflammation in the brain, a discovery which could lead to the development of new treatments. The study was published in the journal npj Parkinson’s Disease.
- In an analysis of electronic primary healthcare records from more than a million people living in East London between 1990 and 2018, researchers at Queen Mary University of London discovered two new early features of Parkinson’s: epilepsy and hearing loss. The study is the first to focus on the pre-diagnostic phase of Parkinson’s in a diverse population with high socioeconomic deprivation but universal access to healthcare. “People from minority ethnic groups and deprived areas have largely been under-represented in Parkinson’s research up till now,” the study’s lead author said, “but to allow us to get a full picture of the condition we need to ensure research is inclusive and represents all those affected.” The study was published in JAMA Neurology.
- Researchers at Yale New Haven Hospital are conducting the first-ever clinical trial involving humans that investigates ketamine as a treatment for Parkinson’s-related depression. While research on the use of ketamine as an effective antidepressant in rodents has been widely available for more than 20 years, this is the first trial that translates these findings into clinical research for human use.
- Using a fruit fly model, researchers at the University of Geneva identified a key protein (also found in mice) that plays a protective role against the destruction of dopaminergic neurons which occurs in Parkinson’s. The findings, published in Nature Communications, showed that increasing the amount of the Fer2 gene in fruit flies had a protective effect. The team is currently testing the protective role of Fer2 in mice.
- A research collaboration led by scientists at UCLA is also using a fruit fly model for Parkinson’s research, investigating the mechanisms that control a protein called Drp1 and the fission of mitochondria. (This fission is of particular interest to Parkinson’s scientists because when it goes awry, the fusion-fission balance system within mitochondria is impacted, and as a result, neurodegenerative diseases including Parkinson’s can develop.) The team recently discovered a link between Drp1 and a protein called CLUH, which attracts Drp1 to mitochondria and causes fission. Their findings, published in Nature Communications, showed that Parkinson’s-related damage to mitochondria could be reversed by increasing the amount of a protein dubbed “clueless,” which is the fruit fly equivalent of CLUH.
- Findings from a randomized Phase 1 trial published in the journal Cell Metabolism showed that oral supplementation of nicotinamide riboside (NR), a form of vitamin B3, increases brain nicotinamide adenine dinucleotide (NAD) levels in people with Parkinson’s. The findings support an ongoing Phase 2 study in Norway that is investigating NR’s effects on Parkinson’s severity and suggest that NR has potential to become a neuroprotective therapy for Parkinson’s.
- A study by researchers at Vrije University of Brussels and the Flanders Institute for Biotechnology in Belgium suggests that nanobodies produced by llamas can target and selectively inhibit certain activities of LRRK2, a gene that, in mutated form, can lead to Parkinson’s.
- Using input from a nine-part series of roundtable discussions that included more than 150 individuals (including people with Parkinson’s, care partners, community organizations, healthcare specialists, and government officials from across Canada), Parkinson Canada recently released their National Roundtable Report, which explores areas that need to be addressed to help Canadians with Parkinson’s live well.
- Researchers at the First Affiliated Hospital of Nanchang University published data from a pain assessment of 200 people in China living with Parkinson’s and found that prevalence of Parkinson’s-related pain was 44.5%. Those who reported experiencing pain indicated that pain was most commonly located in the lower limbs, upper limbs, and waist. The most common type of pain reported was musculoskeletal pain.
- A study published in Brain and Behavior found that of the various cognitive challenges that can occur with Parkinson’s, memory was the most frequently impaired cognitive domain. Data showed that almost two-thirds of the individuals whose data was analyzed met the Movement Disorder Society Parkinson’s disease dementia (MDS PDD) criteria for Parkinson’s-related dementia.
- Also published in Brain and Behavior, a study by researchers at the University Oldenburg in Germany suggests that a modified version of the Interlocking Finger Test may help detect dementia in people with Parkinson’s.
- With the help of a $6.1 million investment, OccamzRazor will use machine learning (a form of artificial intelligence) to analyze large biomedical datasets that can generate testable, data-driven hypotheses that increase success rates and reduce costs in neurodegenerative drug development. They believe the information gleaned will help them identify potential new therapeutic candidates and subsets of people with Parkinson’s who might benefit from them.
- SQZ Biotechnologies has received a $2 million SBIR Phase 2 grant from the National Institutes of Health to develop new cell engineering methods designed to reprogram an individual’s own immune cells directly into dopamine-producing neurons.
- A team of researchers at the Harvard John A. Paulson School of Engineering and the Wyss Institute for Biologically Inspired Engineering have developed a remote-monitoring device that may help tailor treatment for individuals with Parkinson’s and allow for earlier Parkinson’s diagnoses. The MyoExo device consists of wearable sensors that can detect slight changes in muscle strain and bulging. The researchers believe the technology will be valuable for three major stakeholders: the pharmaceutical industry, healthcare providers, and people with Parkinson’s.
- With the aid of a $504,000 grant, researchers at Otago University’s School of Physiotherapy in New Zealand will investigate the progression of Parkinson’s motor and non-motor symptoms on Māori and Pasifika people with Parkinson’s, helping promote diversity, equity, and inclusion in Parkinson’s research and improve the quality of life of people with Parkinson’s living in New Zealand.
- In a study of almost 3,000 people published in Neurology, researchers at the American Academy of Neurology found that over a six-year period, people who took statins (cholesterol-lowering drugs) were on average 16% less likely to develop Parkinson’s symptoms than people who do not take statins. They speculate the reason may be because statins have a neuroprotective effect on arteries in the brain.
- Using a technique called optobiology, a team at Laval University in Quebec, Canada, investigated the causes of Parkinson’s development and progression by fusing the alpha-synuclein protein to the protein cryptochrome protein 2, from a mustard plant. They found that when light of the correct wavelength fell on the mustard protein, it triggered a series of responses that included the aggregation of its alpha-synuclein partner, neurodegeneration, disruption of calcium activity in downstream neuronal targets, and Parkinson-like motor symptoms. The new optogenetic-based experimental model allows for the triggering and real-time monitoring of alpha-synuclein clustering in vivo, which may help further Parkinson’s research and therapies. The study was published in PLOS Biology.
- Google has partnered with the New York Stem Cell Foundation to create AI software that can diagnosis Parkinson’s by taking cells from a person’s skin, extracting Fibroblast cells grown from these skin cells, and analyzing the cells under a fluorescent microscope. The AI cameras capture images that allow robots to establish which cells belong to someone with Parkinson’s with 79% accuracy. The technology helps researchers generate great amounts of data from large populations with the goal of discovering new signatures of Parkinson’s and new therapies and treatments.
PARKINSON’S treatments and THERAPIES
- Results from an online survey conducted by researchers at the University of Bergen’s Norwegian Centre for Movement Disorders showed that 11.3% of people in Norway who are living with Parkinson’s have used or currently use cannabis to manage symptoms. Data also revealed that people who used cannabis were hesitant to seek advice from healthcare providers regarding its use. The study was published in the journal Acta Neurologica Scandinavica.
- Data from the Phase 3 RISE-PD clinical trial showed that treatment with oral IPX-203, an investigational extended-release formulation of carbidopa/levodopa developed by Amneal Pharmaceuticals, reduced OFF time by about 1.5 hours a dose, on average, compared to immediate-release tablets of carbidopa/levodopa.
- Published in npj Parkinson’s Disease, a study by researchers in the Czech Republic who conducted computer-based speech analyses of 60 people with Parkinson’s found that short-term treatment with levodopa does not significantly mitigate speech challenges in people with early Parkinson’s.
- A statistical analysis completed by researchers at the Shirley Ryan AbilityLab found that the most significant factor in people with Parkinson’s getting more hours of physical activity was easy access to a weekly exercise class. The study, published in the journal Clinical Parkinsonism & Related Disorders, looked at Parkinson’s Outcome Project data from 3,146 people with Parkinson’s.
- Early data from a clinical trial involving 40 people with Parkinson’s suggests that JOGO-Gx, a non-invasive digital therapy device, may reduce motor symptoms. The device, which utilizes artificial intelligence and wearables, taps into the neuroplasticity of the brain; it is worn on the wrist and uses biofeedback from muscles motor neurons to help muscles relax.
PARKINSON’S LIVING WELL STORIES
- The Hawaii Parkinson Association is hosting a free event (in person and online) about Parkinson’s mental health challenges and treatment on Saturday, April 9. Learn more and pre-register here.
- Davis Phinney Foundation Ambassador Kerry Howard was recently awarded the prestigious Optimism Award from the Northwest chapter of the American Parkinson Disease Association. “No one knows what the future holds, but I believe in being kind, brave, and grateful,” she says.
- A high school student in Little Rock, AK, has joined a research team at University of Arkansas for Medical Sciences to develop a computer model that can detect features in a person’s voice, with the goal of helping to identify Parkinson’s.
- After being diagnosed with Parkinson’s at age 31, Bryan Hill embraced exercise and optimism to live well. “Exercise isn’t a choice,” he says. “It’s a must in my life.”
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 email@example.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.
BouNDless – Phase 3 trial to investigate the efficacy, safety, and tolerability of ND0612, a continuous subcutaneous levodopa/carbidopa delivery system in comparison to oral levodopa/carbidopa in people with Parkinson’s experiencing motor fluctuations
Parkinson’s Progression Markers Initiative (PPMI) Screen Survey – The Michael J. Fox Foundation
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.
WANT MORE PRACTICAL ARTICLES LIKE THIS?
You can find much more in our Every Victory Counts® manual. It’s packed with up-to-date information about everything Parkinson’s. Request your free copy of the Every Victory Counts manual by clicking the button below.
Thank you to our 2022 Peak Partners, Amneal, Kyowa Kirin, and Sunovion, as well as our Every Victory Counts Gold Sponsor AbbVie Grants, Silver Sponsor Lundbeck, and Bronze Sponsors Supernus and Theravance for helping us provide the Every Victory Counts manual to our community for free.