Science News

New Continuous Pump Medication for Parkinson’s Completes Trials in Europe

Parkinson's Foundation Science News blogs

PRODUODOPA is a new Parkinson’s drug delivered continuously via a pump, similar to insulin pumps used for people with diabetes. Clinical trials show that it can be an effective option for those whose medications are wearing off or who may have dyskinesia. The pump has the potential to reduce the number of pills a person takes each day. 

Parkinson's disease (PD) is a progressive neurological disorder related to the loss of dopamine-producing brain cells. Dopamine, a neurotransmitter, plays a vital role in controlling movement. As dopamine levels decline, people with Parkinson's experience movement symptoms like tremors, stiffness, slowness of movement, along with non-movement symptoms.  

The medication levodopa is a key treatment for Parkinson's. This medication works to alleviate movement symptoms by increasing dopamine levels in the brain, significantly improving quality of life for many people living with PD.  

Medication pump in lab

Levodopa is usually taken orally, several times a day. The challenge with taking it orally is that the relief it provides doesn’t last long — the half-life of levodopa is only 90 minutes, meaning that symptoms can start to reappear soon after taking it. This can lead to motor fluctuations — commonly referred to as “on” and “off” times. In addition, levodopa may not get properly absorbed because Parkinson’s is related to gastrointestinal issues. As a result, there is a need for PD therapies that can offer more consistently effective treatment for movement symptoms.  

Multiple recent clinical trials completed in Europe show the safety and effectiveness of a new formulation of levodopa, called PRODUODOPA (foslevodopa/foscarbidopa), delivered continuously using a small, portable pump that steadily administers the medication under the skin. This technology is commonly used in insulin pumps for people with diabetes.  

The pump allows for adjustable infusion rates and the ability to program extra doses. Users can reduce their infusion rate, which can be beneficial during sleep, and increase their rate or provide extra doses to address periods of the day when more medication is needed. 

When a 2022 phase III clinical trial compared oral levodopa with continuous PRODUODOPA, the study showed that there was a: 

  • Significant increase in time without movement symptoms (“on” time) with PRODUOPOA; and a 

  • Decrease in time spent with movement symptoms when the medication wears off (“off” time). 

The most common adverse effects of the pump were issues with the infusion site — such as swelling, pain or infection. Most of these events were mild and non-serious, however there have been people who have discontinued use of the pump due to adverse events or skin discomfort.  

A pump isn’t for everyone — some people with PD may find that they don’t like using a pump because it can restrict their mobility compared to oral medications. The pump may also cause some discomfort. 

But for most participants in the clinical trials, the pump was well tolerated. The studies found that continuous 24-hour infusion of PRODUODOPA provides more consistent symptom management than oral medications, leading to reduced motor fluctuations throughout the day and night. 

Highlights 

  • Compared to oral levodopa, continuous PRODUODOPA showed an increase in time without Parkinson’s symptoms (“on” time), and a decrease in time with symptoms (“off” time). 

  • The pump allowed for adjustable infusion rates — reduced infusion rate can be beneficial during sleep, while an increased rate can address periods of the day when medication effects diminish. 

  • Most side effects of continuous PRODUODOPA were mild, but in a recent phase III clinical trial adverse events caused 23% of participants to discontinue using the pump. The most common reason was due to issues with the infusion site, such as swelling, pain or infection. 

What does this mean? 

PRODUODOPA delivered via a continuous pump may be a more consistently effective way to reduce Parkinson’s symptoms compared to oral medications. While pumps can effectively deliver treatments, they can also restrict a person's mobility compared to oral medications. Some people may experience some discomfort or other adverse side effects with the pump. 

What do these findings mean to the people with PD in the U.S. right now? 

On October 17, 2024, the pharmaceutical company Abbvie announced that the U.S. Food and Drug Administration (FDA) approved VYALEV™, the same solution of foslevodopa-foscarbidopa as PRODUODOPA.  

In other words, foslevodopa-foscarbidopa is now available in the U.S. under VYALEV, and available in Europe as PRODUODOPA. In the U.S., VYALEV was approved based on the results of the clinical trials mentioned in the above article. Read the full press release from Abbvie here. 

If you are interested in VYALEV, talk to your PD doctor about next steps. Medicare coverage is expected in the second half of 2025. 

A Note from our National Medical Advisor  

“It is always a good day when we have more options for people with Parkinson's. I suspect VYALEV will be a useful approach for select people who have trouble with “off time” or motor fluctuations despite attempts by clinicians to change medication type, dose and frequency. This treatment is less powerful than deep brain stimulation. For those deciding on use of a pump, possible side effects can include skin irritation, hallucinations and dyskinesia. Everyone should understand that there is no reason why you cannot eventually combine therapies, and for example start with a pump and move later to a DBS or use both in combination,” said Michael S. Okun, MD, Parkinson’s Foundation National Medical Advisor and Director at the Norman Fixel Institute for Neurological Diseases.  

Learn More 

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions. 

Advancing Research

Meet a Researcher Generating Digital Brains to Study How Depression Affects Parkinson’s Disease

Henricus Ruhe

While Parkinson’s disease (PD) may be most known for its movement symptoms, there are many non-movement symptoms that accompany the disease as well, including depression. Research has shown that depression is associated with increased PD severity, implying that the brain circuits affected in depression may also worsen Parkinson’s.  

Understanding how depression and PD overlap in the brain is the focus of Henricus Ruhe, MD, PhD, recipient of a Parkinson’s Foundation Impact Award, as identifying the connections between the two could uncover improved treatments for both. To take on this research challenge, he will use a new technique called whole-brain computational modeling — in essence, creating a virtual brain based on magnetic resonance imaging (MRI) scans. 

“Recent developments in computational neuroscience have led to a better understanding of the hierarchical organization of the brain and the identification of a functionally rich club that orchestrates differential functions of the human brain,” Dr. Ruhe said about the background of the modeling technique he will be using.  

For this research, he will collaborate closely with Morten L. Kringelbach, PhD, from Oxford University and Gustavo Deco, PhD, from Pompeu Fabra University in Barcelona, who developed the techniques.  

The process is complex, but put simply, it allows scientists to use the data collected from MRIs to recreate digital simulations or models of the brains of different groups of patients to experiment with changing these models using computers (i.e. perturbations). The research does not require petri dishes or test animals. 

Using MRI data from people with PD who either do or do not also have depression, Dr. Ruhe plans to create digital brains of these PD patients to study their communalities and differences. Analysis of these models can help to map out nodes, brain regions that activate together, and illuminate how information moves between these nodes in the brain in different ways and contexts. 

Identifying which nodes are affected by PD and depression could establish new therapeutic targets that address both conditions at once. This modeling technique also allows Dr. Ruhe to simulate the effects of different drugs on these virtual brains that affect those nodes.  

“Subsequent computational changes — which mimic the reactivity of the brain to external stimulation — can innovatively identify critical nodes important for transitions to and away from disease states,” he said. “To date, these methods have never been used to investigate depression in Parkinson’s.” 

With the power of modern computing and data analysis, Dr. Ruhe will be able to investigate new treatment strategies for people with depression and PD, all within this digital workspace. Dr. Ruhe is excited to begin this work and for the potential it holds to help those with Parkinson’s.  

“We expect that with better knowledge of brain dysfunction in depression in PD, and with the whole brain models we will be constructing, we innovatively will bring a more personalized treatment approach in reach,” he said. 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

My PD Story

Xiaowen Zhuang
Researchers

Xiaowen Zhuang, PhD

2021 Postdoctoral Fellowship
2024 Launch Award

Illuminating the Neurobiology Behind Impulsivity Associated with Parkinson’s Medication  

Studies estimate that at up to 40% of people taking dopamine-related drugs to treat Parkinson’s disease (PD) symptoms develop an impulse control disorder (ICD) as a side effect of the medication. While this phenomenon is likely related to dopamine’s role in reward-seeking decision-making in the brain, the specific biological patterns involved are still not fully understood.  

Xiaowen Zhuang, PhD, recipient of a Parkinson’s Foundation Launch Award and previous Postdoctoral Fellow, will be utilizing her new mouse model of ICD, along with complex brain analysis and manipulation technology, to shed light on the neurobiology of the condition. She hopes this research can inspire future PD treatments that avoid the side effect altogether. 

In humans, ICD can present in many ways such as binge eating, impulse shopping or excessive gambling. To study impulsivity in lab animals, researchers often measure what is known as delay discounting behavior, reflecting the subject’s ability to weigh reward value against the time required to receive it. High impulsivity results in high delay discounting, favoring a smaller immediate reward to a larger delayed reward.  

Under the mentorship of Dr. Alexandra Nelson at the University of California, San Francisco, CA, a Parkinson’s Foundation Center of Excellence, Dr. Zhuang will use a delay discounting experiment for mice which measures how long they are willing to wait for a larger reward of food, or conversely how impulsive they act in taking a smaller reward right away.  

Previously, she used this test on healthy mice and mice with PD-like neurodegeneration taking dopamine medication. The major finding was that the latter group showed increased impulsive behavior, taking the smaller immediate rewards significantly more often than the healthy mice. 

Building upon these preliminary experiments, Dr. Zhuang will next utilize optogenetics (a biological technique that uses light to turn specific neurons on and off on demand) to test if specific neurons in the striatum region of the brain are responsible for ICD behavior.  

She expects that activating certain neurons and inhibiting others during the tasks will make the mice more impulsive, confirming the neurons’ relevance to the condition.  Dr. Zhuang will also use her optogenetic tools to determine if altering the neurons’ synaptic plasticity — their adaptive increase or decrease in ability to receive signals — can contribute to impulsive behavior as well. 

These in-depth experiments will greatly add to our understanding of how brain changes during PD treatment may cause ICD, providing valuable insight into how future medicines might prevent or remedy such side effects.  

Discussing what this support means to her research and professional development, Dr. Zhuang said, “This award will lead me to be able to ask questions in the field of cognitive deficits of PD with a focus on impulsivity using a multi-disciplinary approach. The findings gained from this research will not only provide greater insight into the synaptic mechanisms of ICD, but also inform the use of dopamine replacement therapy with a goal of preventing or ameliorating impulse control disorders.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

My PD Story

Silas Buck
Researchers

Silas Buck, PhD

2024 Postdoctoral Fellowship 

Uncovering a Missing Link Between Genetic Mutation and Protein Clumping in PD 

Several genetic mutations linked to the development of Parkinson’s disease (PD) have been discovered over decades of research. However, fully understanding how those mutations can cause PD is an ongoing scientific challenge.  

One such PD-associated mutation leads to the production of a malfunctioning version of the protein LRRK2. Faulty LRRK2 is believed to disrupt several important processes within neurons and consequently contribute to PD progression, but how exactly these disruptions lead to the disease is still being studied.  

Silas Buck, PhD, recipient of a Parkinson’s Foundation Postdoctoral Fellowship, believes a relatively understudied protein may be affected by mutant LRRK2 and drive PD-related cellular breakdown. Through his experiments, he will seek to understand how this protein (called HDAC6) is corrupted in LRRK2-associated PD and how we might use this knowledge to create new treatments that prevent disruption to slow the disease. 

When looking at the posthumous brain tissue of people who had LRRK2-mutant PD, scientists have routinely seen unhealthy aggregates or clumps of a protein called tau. Similar to alpha-synuclein clumping, tau clumping is believed to contribute to the disease-related breakdown of dopamine neurons and is associated with PD dementia. HDAC6 is a protein with many responsibilities, one of which is to regulate tau and keep it from clumping. However, Dr. Buck hypothesizes HDAC6 may be a missing link connecting LRRK2 to tau clumping in PD. 

“Determining the potential positive effect of HDAC6 inhibition in Parkinson’s disease could have an immediate impact on people with Parkinson’s disease,” said Dr. Buck. 

Dr. Buck, working in the lab of Dr. Laurie Sanders at the Duke University School of Medicine in Durham, NC, a Parkinson’s Foundation Center of Excellence, will be conducting research to see if and how mutant LRRK2 causes disruptions in HDAC6 that lead to PD-associated tau clumping. Using neurons grown in petri dishes, Dr. Buck will first measure how much LRRK2 and HDAC6 interact in healthy brain cells.  

Then, he will introduce mutant LRRK2 into those cells and analyze how that affects the LRRK2-HDAC6 interactions and if such changes result in tau clumping. Finally, Dr. Buck will investigate if mutant LRRK2’s impact on HDAC6 also contributes to disrupted mitochondria repair and cleanup, another cellular stressor commonly seen in PD brain tissue.  

Uncovering more biochemical links in the chain between gene mutation and PD means more opportunities to intervene in the disease’s progression. Through Dr. Buck’s experiments, we will understand more about HDAC6’s role in PD development and how it could be the target of new future therapies, expanding the effective medication options and improving doctors’ ability to provide genetically personalized treatment plans for people with Parkinson’s. 

When asked about the personal and scientific impact of this Parkinson’s Foundation support, Dr. Buck said “Receiving this postdoctoral fellowship allows me to pursue my passion of performing exciting and important research that could one day help substantially improve the lives of people with Parkinson’s disease. It has always been my dream to make a difference in the health of others through research, and I hope to achieve that through this project.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

My PD Story

Inés Patop
Researchers

Inés Patop, PhD

2024 Postdoctoral Fellowship 

Investigating How Parkinson’s Derails Crucial Transport Routes Within Neurons 

Neurons, the cell type that transmits information in our brain and nervous system, are complex in ways that have puzzled researchers for decades. Depending on their location and role in the body, neurons can vary wildly in shape and activity, with some stretching up to a meter in length to perform their signaling duties. Their unique form and function also create challenges for neurons, having to manage cellular upkeep across long distances to stay fit and functional.  

The dopamine-producing neurons in the brain progressively lost in Parkinson’s disease (PD) are no exception. How the disease may impact the cells’ critical maintenance is still not well understood. Inés Patop, PhD, recipient of a Parkinson’s Foundation Postdoctoral Fellowship, will be utilizing new and sophisticated biological tools to improve our understanding of not just how PD may affect neuronal upkeep, but specifically where it is most damaging within the cell and how we can use that knowledge to design more efficient therapies. 

While their shape and size vary across the body, all neurons are composed of two distinct parts:  

  1. The soma: the larger main area of the cell that contains the DNA-storing nucleus 

  1. The neurites: the tendril-like extensions that reach out to other cells to either receive signals (as dendrites) or convey signals (as axons).  

In each of these parts are mitochondria, miniature cell powerplants that require routine maintenance to keep the cell working properly. Parkinson’s disease has been associated with mitochondria misfunction for more than 30 years, being most of the PD-associated mutations involved in the process of clearing defective mitochondria.  

The trick is that the blueprints needed for proper mitochondrial function and to repair and clear defective mitochondria come from the nucleus in the soma, so to maintain or clear the far-away mitochondria in the neurites, the neuron needs to print and transport those blueprints (called RNA) across the cell. That process requires significant coordination to execute properly, coordination that is likely disrupted in neurons affected by PD-associated mutations.  

From the lab of Dr. Stirling Churchman at Harvard University in Boston, MA, Dr. Patop will utilize special growing chambers that will allow them to isolate and study the soma and neurites of neurons individually. They will then run complex biochemical analyses to see how RNA printing and transport, mitochondria repair and more differ between the distinct cell regions, and how each is affected by PD mutations. From this data, Dr. Patop hopes to better understand how PD may affect neurons differently from soma to dendrites, potentially leading to new future treatments that target the most impacted regions of the cells. 

When asked what the Parkinson’s Foundation research funding means to them, they said, “I am confident this opportunity will lay a strong foundation for my future career, empowering me to make meaningful contributions to the scientific community and, ultimately, improve the lives of those affected by Parkinson's disease. Through this research, we expect to identify new regulatory mechanisms implicated in PD, potentially identifying novel drug targets for treatment. The impact of this research could significantly advance our understanding of PD and pave the way for innovative therapeutic strategies.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

Advancing Research

Meet the Researcher Shining a Light on Parkinson’s Treatment-Induced Impulsivity

Xiaowen Zhuang, PhD

Dopamine replacement therapies, such as dopamine agonists and the commonly used drug levodopa, can alleviate some of the more debilitating movement symptoms of Parkinson’s disease (PD), restoring precious autonomy and quality of life to those that need it. However, these therapies are not without side effects, one of which is the potential to develop an impulse control disorder. 

Up to 40% of people who take dopamine-replacing drugs for their PD experience impulse control disorders (ICDs). ICDs can present themselves in many ways, including gambling addictions or excessive eating.  

Xiaowen Zhuang, PhD, a recipient of a Parkinson’s Foundation Launch Award, wants to better understand the neuroscience behind this medication-induced impulsivity so that we can improve future treatments to avoid this side effect altogether. 

Dr. Zhuang will study ICD using mice, measuring what is known as delay discounting behavior, which is how much a subject is willing to ignore an immediate smaller award (like treats) and wait for a larger award instead. She uses tools called operant boxes that allow her to train mice on this “small award now vs. larger reward later” scenario and collect data on how their impulsivity changes in different conditions. 

Delay Discounting Behavior

The degree to which a delay for greater reward discounts the value of that award compared to a smaller, immediate one in the mind of the decision-maker. 

  • Low impulsivity = Low delay discounting > Willing to wait for larger reward  
  • High impulsivity/ICD = High delay discounting > More likely to take immediate, smaller reward 

Once the mice are trained, Dr. Zhuang will then utilize a cutting-edge scientific method called optogenetics to turn on or off certain decision-associated neurons in the brain and observe how that affects the mice’s impulsivity. From these experiments, she hopes to home in on the specific parts of the brain connected to ICD and discover how exactly they are affected by PD medications. This knowledge could then guide the development of future treatments where such impulsivity symptoms are no longer a concern. 

Dr. Zhuang’s interest in this topic began once she joined the lab of Alexandra Nelson, MD, PhD, at the University of California, San Francisco, CA, in 2020. 

“Discussions with my mentor, Dr. Nelson, deepened my understanding of the severe complications experienced by Parkinson's disease patients, among which impulse control disorder is a salient one,” Dr. Zhuang said. “These severe consequences intensified my desire to learn new skill sets to dissect the circuit mechanisms.” 

Shortly after joining, the COVID-19 pandemic forced all researchers away from labs and into their homes. But this didn’t stop Dr. Zhuang’s scientific enthusiasm.  

“While she had little coding experience or familiarity with operant behavior prior to joining my lab, with only modest guidance and the loan of a power drill and soldering iron, she built custom operant boxes at home, wrote code to run them, and developed a plan for progressive training and testing with a delay discounting task,” said Dr. Nelson. “She tested her boxes over Zoom, using a fuzzy mouse toy to trigger nose pokes.” 

Back in the lab and ready to begin her Foundation-supported research, Dr. Zhuang is excited about how her research may improve the lives of those relying on PD medicine.  

“Despite its prevalence, our understanding of ICD’s cause is limited, and effective treatments or interventions are yet to be discovered,” she said. “My research could pave the way for new treatments for Parkinson's disease that help manage symptoms more effectively without leading to these impulse control issues.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

Science News

New Study Further Personalizes Deep Brain Stimulation

Parkinson's Foundation Science News blogs

Deep brain stimulation (DBS) is a surgical treatment that provides relief to people with Parkinson's disease (PD) who experience movement symptoms and medication side effects. Since its U.S. Food and Drug Administration (FDA) approval to treat PD symptoms in 2002, DBS can help reduce medication needs and stabilize symptoms. PD symptom severity often varies throughout the day — because DBS provides constant electrical stimulation, there can be times when it is too much or too little, which limits its effectiveness. 

A recent study has developed a new approach, known as adaptive DBS, which has the potential to further personalize DBS treatment for Parkinson's. It was recently tested in a small clinical trial reported in Nature Medicine. 

Utilizing custom computer algorithms and artificial intelligence (AI), adaptive DBS can detect symptom changes in real time by monitoring brain activity that is specific to each participant. When it detects changes, the system delivers precisely calibrated electrical pulses to counteract these shifts. 

The system delivers more electrical stimulation during periods of stiffness (bradykinesia) and less during phases of involuntary movement (dyskinesia). It also adjusts stimulation based on the effectiveness of levodopa medication, providing more stimulation when the medication wears off and less when it's active.  

About the Study & Results

deep brain stimulation

The clinical trial enrolled four participants who were diagnosed with Parkinson’s at least six years earlier. Each participant underwent conventional DBS surgery. Researchers collected brain activity data for each participant, then used that data to create personalized algorithms to detect and respond to symptom fluctuations. Months after the initial DBS surgery, each participant was switched to adaptive DBS. 

To compare the two types of DBS, participants switched between conventional stimulation and the personalized version every two to seven days over a period of two months (one month spent with each stimulation type). Neither the participants nor most of the researchers knew which type of stimulation was being delivered at any time. Participants reported their symptoms daily, and wearable monitors detected changes in their movement symptoms. 

All four participants experienced nearly a 50% reduction in time spent with their most troublesome symptom when adaptive DBS was active compared to conventional stimulation. They reported that their worst symptoms went from persisting for about 25% of their day down to about 12%. Additionally, adaptive DBS did not worsen other PD-related symptoms. Overall, participants reported an improved quality of life with adaptive DBS.  

By dynamically adjusting stimulation parameters based on real-time brain signals, adaptive DBS appears to offer a more personalized and effective treatment for Parkinson's than conventional DBS. 

Highlights 

  • A clinical trial enrolled four participants to test a surgical treatment called adaptive DBS that detects and responds to brain activity to provide individualized and customized stimulation to help with Parkinson’s symptoms. 

  • All four participants experienced a nearly 50% reduction in time spent with their most troublesome symptom when adaptive DBS was active. 

  • Adaptive DBS did not worsen other PD-related symptoms. 

  • Participants reported improved quality of life with adaptive DBS compared to conventional DBS. 

What does this mean? 

Adaptive DBS may be an evolved version of DBS treatment for improving movement symptoms of Parkinson’s. The study finds that using new technology can further personalize DBS currents and make DBS even more effective in treating troublesome PD symptoms. However, developing the customized algorithms for each participant was time consuming in this small study, and it will take time before it becomes widely available. 

What do these findings mean to the people with PD right now? 

It’s important to keep in mind that this was a small study of only four participants. The study, and its technology will need to be replicated on a much larger scale. Still, the study findings are exciting and bring hope for the PD community, as proven by its media coverage. The concept of adaptive DBS may eventually become the standard for DBS treatment, and with further development and refinement, people with conventional DBS may be able to use adaptive DBS in the future.  

Adaptive DBS is still in testing and it does not have widespread availability. People should talk to their doctors about their treatment options and if they have DBS, ask doctors or their care team to inform them if a similar adaptive DBS study begins to recruit.  

Get Involved with Parkinson's Research

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Advancing Research

Parkinson’s Foundation Presents Five Findings at International Congress of Parkinson’s Disease and Movement Disorders®

Researcher in lab

Every year thousands of Parkinson’s disease (PD) experts and researchers share research findings that have the potential to help people living with Parkinson’s at the International Congress of Parkinson’s Disease and Movement Disorders. This year the conference took place from September 27 to October 1 in Philadelphia, PA.  

The Parkinson’s Foundations shared five new Parkinson’s studies, revealing new information about genetics research, care and our work with the Black and African American community. These findings offer new hope for people living with PD and caregivers alike.  

Explore the five research findings the Parkinson’s Foundation shared with the international PD community below:   

SEE ALL POSTERS

1. Expanding the PD Generation Study to Increase Clinical Genetic Testing and Counseling Using Whole Genome Sequencing Among Diverse Parkinson’s Populations 

PD GENEration: Mapping the Future of Parkinson’s disease is a Parkinson’s Foundation research study that offers genetic testing and counseling, in English and Spanish, to people with Parkinson’s through a whole genome sequencing platform. This study aims to simplify access to clinical genetic testing to people with PD and offer educational materials to clinicians on PD genetics. 

Key Takeaways: 

  • The study has enrolled 18,003 participants, as of September 2024. 

  • The study has expanded to five countries from Latin America (Colombia, Chile, Peru, Mexico, Ecuador), Israel, Canada, and 10 additional sites in the U.S. that focus on underrepresented populations. 

  • 12.2% of people with Parkinson’s, who have completed testing, tested positive on the PD GENEration 7-gene panel. 

  • By providing genetic testing to all those interested and from all backgrounds, the study helps inform care, diversify the data, help engage people in research, and qualify more for enrollment in clinical trials for PD. 

PD GENEration goals include helping accelerate clinical trials in PD, improving PD care and research and empowering people with PD and their care teams. 

Learn more & enroll in PD GENEration.

2. Engagement of the Black and African American Community in PD Genetics Research 

Advancements in understanding the biological pathways of Parkinson’s have largely been focused on people of European ancestry. There is a critical need to understand genetic differences across populations, including people with African ancestry. The Parkinson’s Foundation partnered with Morehouse School of Medicine, a historically Black institution of medicine to improve inclusion in PD GENEration, prioritize PD awareness, education and resources; and tailor our research advocacy training program — the Learning Institute.   

Key Takeaways: 

  • Through this partnership with Morehouse School of Medicine, from November 2021 to March 2024, 157 Black and African American participants enrolled in PD GENEration.  

  • 14 community education events were held, including the Learning Institute in September 2023. 

  • Media was developed and utilized to expand reach and included two webinars, five podcasts and six blogs/news articles.  

Establishing partnerships with trusted sources of the Black community is critical to providing equitable access to PD education and resources, including PD GENEration. Focusing on diversity and inclusion in PD GENEration will accelerate breakthroughs towards a cure for PD.     

Learn more about our impactful partnership with Morehouse. 

3. Benefits of Parkinson’s Team Training Are Maintained Long-term 

The goal of Parkinson’s Foundation Team Training is to provide more coordinated and complete patient-centered care to improve the quality of life of people with PD and caregivers. Our study aimed to demonstrate the effectiveness of the training program and determine if the benefits of Team Training are maintained long-term. 

Key Takeaways: 

  • Through Team Training, team members become more effective in delivering better interprofessional, patient-centered care.  

  • Results showed significant and sustained improvements in: 

  • Healthcare professional confidence in various measures of providing care 

  • Team coordination working with persons with PD and their care partners 

  • Understanding of the other team member roles and how team members can assist in the care of persons with PD and their care partners. 

  • The effectiveness of the Team Training program’s education is maintained and sustained long term. Better care leads to better lives for those living with PD and their care partners. 

Parkinson’s Foundation Team Training provides a continuing education program for healthcare professionals to learn more about PD and how to develop and maintain an effective PD interprofessional team.  

Explore our Learning Lab courses, designed for healthcare professionals.  

4. Engage, Educate and Empower: Parkinson’s Research Advocates from the Black and African American Community  

Black and African American people with Parkinson's face significant disparities in care, including delays in diagnosis and treatment, limited access to care and historical exclusion from research. To address these challenges, the Parkinson’s Foundation Research Advocacy Training program, the Learning Institute, was tailored to engage, educate, and empower the Black community in Parkinson’s research. 

Key Takeaways: 

  • The Learning Institute was held in September 2023. 33 people from the Black community were trained in research advocacy.  

  • Many research advocates felt prepared to begin research advocacy (79%) and most felt excited about the work they can do as a research advocate (83%). 

  • To date, 17 advocacy tasks were completed by 26 research advocates, including presentations at local churches and health fairs, panelists at a Parkinson’s Foundation community-based program, and partnerships with researchers.  

The Learning Institute empowered African Americans living with PD to become advocates for community outreach and engagement. This program has the potential to drive meaningful change, enhance health equity, and improve outcomes for those living with PD in the Black and African American community. 

Learn more about our research advocates. 

5. Hospital Care Learning Collaborative: Sharing Strategies to address the Parkinson’s Foundation Inpatient Clinical Care Standards 

With the launch of the Parkinson’s Foundation Hospital Care Learning Collaborative, the Foundation in partnership with healthcare leaders, clinicians and institutions, aims to eliminate preventable harm and promote higher reliability in care for people with Parkinson’s in the hospital. The Learning Collaborative work to implement quality improvement projects focused on improving hospital safety for people with PD. Participants shared strategies and best practices to address the hospital care standards, as outlined in the Parkinson’s Foundation Hospital Care Recommendations.  

Key Takeaways: 

  • A framework to work with the hospital IT team to request adjustments to the Electronic Health Record, including the ability to customize times for Parkinson’s medication orders. 

  • Strategies to avoid medication delays in the event of safety concerns due to swallowing challenges (dysphagia), including the use of crushed Parkinson’s medication and an automated trigger for a Speech Language Pathologist evaluation.  

  • The use of an Electronic Health Record alert when unsafe medications are ordered, offering alternatives that are already approved by the hospital Pharmaceutical & Therapeutics committee. 

The Parkinson’s Foundation is committed to improving hospital safety for people with PD. In addition to our Hospital Safety Guide, a resource for people with Parkinson's and care partners, the Foundation works with hospitals and health systems to help promote awareness and delivery of the best care for the Parkinson’s community.  

Read and download the Hospital Safety Guide today. 

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Stay up to date with Parkinson’s Foundation through our Parkinson’s Today blog.  

My PD Story

Trisha Pasricha headshot
Researchers

Trisha Pasricha, MD

2024 Impact Award 

Exploring Gut Health Biomarkers as Early Indicators for Parkinson’s  

The ability to identify Parkinson’s disease (PD) in people before the onset of progressing movement and cognitive changes is a major goal of PD research. Through retrospective studies, some early symptoms have been routinely noted in people years prior to their PD diagnoses, making them potential flags for catching the disease sooner. Gastroparesis, which consists of bloating and nausea, is an example of a symptom experienced earlier in life by a large majority of those with PD. However, this condition is also common amongst people who never develop PD, making it difficult to use as a reliable PD indicator without more data.  

Trisha Pasricha, MD, and recipient of a Parkinson’s Foundation Impact Award, aims to compare the gut biology of those with and without PD using innovative new technology, to discover the biomarkers of PD-linked gastroparesis that will improve future diagnoses. 

Previous research into the active biology of the gut has been limited due to the difficulty in collecting useful tissue samples from live donors. Fortunately, recent technological advances in biopsy collection tools now allow researchers like Dr. Pasricha to safely obtain “full-thickness” gut tissue samples with more deeper layers of the gut wall for study.  

From her lab at the Beth Israel Deaconess Medical Center in Boston, MA, a Parkinson’s Foundation Center of Excellence, Dr. Pasricha will analyze the gastric biology of full-thickness gut tissue samples collected from: 

  • People with PD in all stages 

  • People with gastroparesis, without PD  

  • People without either condition  

Each layer of the gut wall consists of a diverse mix of muscle, connective tissue, neurons and immune cells. Dr. Pasricha, using a wide range of measurement tools and techniques, will investigate which cell types in which layers are most differentially impacted in PD gastroparesis compared to non-PD gastroparesis. The goal of these comparisons is to highlight potential gut biomarkers that will allow future physicians to spot PD earlier from initial gastrointestinal issues.  

She will also compare these biomarker results to clinical assessments from the tissue donors with PD, looking for correlations between gut health and disease severity to further explore the link between the two. 

As a clinician working directly with people with PD experiencing gastrointestinal issues, Dr. Pasricha is inspired to receive the Parkinson’s Foundation grant and motivated to begin this translational research.  

“I have met countless patients living with Parkinson's who seek my help treating their gastrointestinal symptoms,” she said. “I am grateful that because of this award I will be able share with my patients that I am part of the community of scientists working to address the bigger unmet needs of patients like themselves. These findings may be leveraged toward establishing future gastrointestinal biomarkers or therapeutic targets to help alleviate those suffering from this disease.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

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MTR Headshot Henry Houlden
Researchers

Henry Houlden, PhD

2024 Impact Award 

Exploring a Unique Genetic Risk Factor for Parkinson’s in Black and African American Populations 

Along with aging and environmental factors, genetics is one of the three major factors involved in the development and progression of Parkinson’s disease (PD). Ongoing research aims to find disease-associated gene mutations to better understand PD and how to prevent or treat it. While many critical discoveries have been made from such studies, it is important to note that the research to date has been predominantly conducted using genetic samples from those of European ancestries, leaving a gap of scientific knowledge for those people with PD of other ancestries.  

Henry Houlden, PhD, a recipient of a Parkinson’s Foundation Impact Award, will be expanding the diversity of our genetic understanding of PD by studying a newly discovered disease-associated mutation found nearly exclusively in African American and African-admixed (people of African heritage outside of Africa) populations through a fruitful partnership with Professor Njideka Ulunma Okubadejo, MBCHB, MD, FMCP, FAAN, and her team in Lagos, Nigeria, and colleagues at the National Institutes of Health in Bethesda, MD. 

The mutation in question was found when Dr. Houlden and colleagues previously performed a genome-wide association study with DNA samples from nearly 200,000 people of African American and African-admixed ancestry, approximately 1,500 of whom have PD. This type of study analyzes the entirety of each person’s DNA and highlights similarities and differences between the genes of those with and without the disease, offering potential genetic clues as to which mutations are linked to PD.  

One of the clues Dr. Houlden found was a PD-linked mutation in the DNA region that helps make an enzyme called GCase (glucocerebrosidase). While PD-linked mutations in this region have previously been found, this mutation seems to affect how the enzyme works in ways that have not been observed before in similar, European ancestry-related mutations. 

To better understand how this mutation may lead to PD, Dr. Houlden will measure various genetic and biochemical factors related to GCase in 72 blood and tissue samples from people of African American and African-admixed ancestry with and without PD. He will also use parts of those samples to create petri-dish neurons of these donors, allowing him (and future researchers) to more effectively investigate how the mutation may drive the development of PD.  

From these experiments, Dr. Houlden will generate valuable data advancing our understanding of this African-ancestry PD risk factor and contribute to new PD treatments for these underrepresented populations. 

From his lab in the University College London Institute of Neurology in the United Kingdom, Dr. Houlden is ready to continue his impactful research through Parkinson’s Foundation grant funding.  

“I am very interested in Parkinson's disease in diverse populations I think this is a major link that is missing in our research strategy and will bring significant findings important to PD across the world,” he said. “The award will also exemplify how foundations around the world, such as the Parkinson's Foundation, are funding global research and understand the need to investigate and form partnerships with diverse populations for research.” 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

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