Science News

Vitamin D Levels Linked to Falls and Some Non-Motor Symptoms in People with PD

Parkinson's Foundation Science News blogs

A new study finds vitamin D levels are significantly correlated with falls and some non-motor symptoms in people with Parkinson’s disease (PD). The results of this clinical trial appear in the March 9, 2019 edition of Neurologica.

Vitamin D deficiency is widespread in people with PD. Although epidemiological studies have investigated the relationship between PD progression and vitamin D levels, the results have been mixed. Some studies have reported a higher prevalence of vitamin D deficiency in people with PD compared to those without PD, while others did not find a relationship between vitamin D and PD progression.

Looking under a microscope

Previous studies of vitamin D and PD only focused on one or two aspects of PD and did not include non-motor symptoms, which can seriously limit quality of life. Vitamin D has a vital role in bone metabolism. Lack of vitamin D is correlated with an increased risk of falls and fractures. This can increase hospitalization and even fatal disability rates in people with PD. Studies have also shown that vitamin D levels are associated with cognition and mood in people with PD.

For the new study, researchers led by Jing Chen and Chun-Feng Liu at the Department of Neurology, Second Affiliated Hospital of Soochow University in Suzhou, China, studied 182 participants with PD and 185 people without PD. Researchers measured participants’ vitamin D levels and bone mineral density (BMD) of the lumbar spine and femoral neck (located near the top of the femur bone).

Results

  • PD Participants had significantly lower vitamin D levels in their blood compared with people without PD.
  • PD participants with lower vitamin D levels had significantly higher frequency of falls and insomnia.
  • PD participants with lower vitamin D levels had significantly higher scores for the Pittsburgh Sleep Quality Index (a measure of sleep problemsdepression and anxiety).
  • Participants with PD had significantly lower mean BMD of the lumbar spine and femoral neck.

What Does It Mean?

This study clearly identified associations between vitamin D levels and some non-motor symptoms in people with PD. The results indicate that vitamin D deficiency may play a role in the development of PD and suggests that vitamin D supplementation may be useful in treating the non-motor symptoms of PD.

The researchers conclude that overall, the findings support further study of vitamin D supplementation for its possible benefits on both the clinical symptoms and quality of life of people with PD.

Learn More

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

Advancing Research

Meet the Researcher: Gene Mutation That Promotes Protein Aggregation Could Spur Parkinson's

Scientist in a lab

Over the next three years the Parkinson’s Foundation will invest more than $50 million to Parkinson’s disease (PD) research and clinical care. At the heart of our research initiatives are scientists and researchers who have received Foundation awards to improve our understanding of Parkinson’s, which will ultimately lead us to a cure.

A key feature of Parkinson’s disease is abnormal protein clumping within nerve cells or neurons. These protein clumps, called aggregates, spread throughout the nervous system as Parkinson’s progresses. How this occurs remains unclear.

Mutations in the GBA1 gene are a strong genetic risk factor for developing Parkinson’s. They are also linked with faster progression of motor and cognitive symptoms.

Marie Ynez Davis, MD, PhD

Marie Ynez Davis, MD, PhD, of VA Puget Sound, received a Clinical Research Award from the Parkinson’s Foundation to investigate a potential new role for the gene GBA1 in speeding the spread of protein aggregates through exosomes. These are small bubble-like structures released by neurons and other cells. They contain proteins and other material that can travel and be received by other neurons and cells.

Dr. Davis’ goal is to find out whether a lack of GBA1 influences the development of Parkinson’s by increasing the number of exosomes and the proteins inside them that can be delivered to other neurons. This could promote clumping in the receiving neurons throughout the nervous system.

To achieve this goal, she will study human neurons from people with GBA1 mutations and Parkinson’s. She will examine the development and structure of exosomes. She will also look at their ability to promote protein aggregation.

Our hope is that results from this work will improve our understanding of how Parkinson’s occurs. It may also reveal new targets for therapies that could halt or slow progression of the disease.

Parkinson's Foundation Clinical Research Awards help facilitate the development of clinician scientists, ensuring that promising early career scientists stay in the PD field to help us solve, treat and end this disease. 

What's Next: Reporting Our Findings
Parkinson’s Foundation research awards fund Parkinson’s studies than can span up to three years. Scientists submit yearly progress reports to the Parkinson’s Foundation, and we report findings once the studies have concluded. Stay up to date with our latest research findings at Parkinson.org/Blog.

Tips for Daily Living

Podcast Playlist: Our Top Podcast Episodes to Get you Through Fall

fall podcast picks

While the leaves may be changing, your favorite podcast isn’t going anywhere! Cozy up, sit back and get ready to learn from our Parkinson’s disease (PD) experts with our top Substantial Matters: Life and Science of Parkinson’s podcast episodes:

  1. Stall the Fall
    People with Parkinson’s are two times as likely to fall as other people their age. While healthcare professionals recognize the extent of the problem, there is still a lot to learn about why they happen and what can be done to prevent them.

Listen Now

  1. Depression in Parkinson’s 
    With depression as a common PD symptom, people with Parkinson’s should be conscious of their increased susceptibility to seasonal depression. Learn about the symptoms that accompany depression and how they may overlap with PD itself.  

Listen Now

  1. The Launch of PD GENEration
    Fall means school is in session. Learn about our latest study, PD GENEration: Mapping the Future of Parkinson’s Disease, and how it aims to help uncover key mechanisms responsible for PD and its progression.

Listen Now

  1. Seeking a Second Opinion After a Parkinson’s Diagnosis
    People are being newly diagnosed with Parkinson’s year-round. Learn more about seeking a second opinion from a movement disorders specialist. It may help to confirm the diagnosis and address any lingering unanswered questions.

Listen Now

  1. Addressing Sleep Discomfort with Parkinson’s
    The seasonal time change can lead to trouble sleeping for everyone, but people with PD experience sleep problems as a symptom. Changes in the brain can affect mood, thinking and the sleep-wake cycle. Find out how to address sleep discomfort.

Listen Now

  1. Palliative Care as Supportive Care in PD
    A change in temperature can bring muscle stiffness. As people with PD understand the benefits of palliative care, they are adding it to their regimen. Palliation means to ease the burden of the symptoms of a disease.

Listen Now

  1. Dance Therapy for PD
    A change of season can be the perfect time to try something new. Besides medication, people with Parkinson’s can benefit from many other forms of therapy, including physical, occupational, speech, music, art therapies, along with dance/movement therapy (DMT).

Listen Now

If you liked what you heard, subscribe, rate and review the series on Apple podcasts or wherever you get your podcasts.

If you have any questions about the topics listed or want to leave feedback on this podcast or any other subject, you can do so here.

Advancing Research

Parkinson’s Foundation to Present Most Recent Mental Health Research Findings

Man talking to therapist

Non-movement Parkinson’s disease (PD) symptoms can impact mental health, relationships and quality of life. The Parkinson’s Foundation has conducted two recent studies dedicated to learning more about treating non-movement symptoms within its Center of Excellence Network.

Centers of Excellence are medical centers with a specialized team who are up to date on the latest Parkinson’s medications, therapists and research to provide the best care to a combined 185,500 people with Parkinson’s.

International Congress of Parkinson’s Disease and Movement Disorders

This year, the Parkinson’s Foundation will share their research findings at two international conferences: at the International Congress of Parkinson’s Disease and Movement Disorders in Nice, France, and at the World Parkinson Congress (WPC), which took place in June at Kyoto, Japan.

Both conferences gather thousands of neurologists, researchers and health professionals in the Parkinson’s community.

Multidisciplinary Care Models for Parkinson’s Disease: The Parkinson’s Foundation Centers of Excellence Experience

People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach, where different specialists treat motor and non-motor symptoms as the disease progresses. Every Center of Excellence works with a multidisciplinary team in one of three different care models:

  1. Team members are all in the same institution.
  2. Team members are within different, but affiliated institutions.
  3. Team members are in separate institutions, mainly community based.

The Parkinson’s Foundation studied usage of complementary health therapies across the three models and examined relationship between therapy usage and clinical outcomes. The study used Parkinson’s Outcomes Project (the largest ongoing Parkinson’s study) data to analyze 10,058 patients from 22 designated centers. The study showed that:

  • Therapy referrals varies across different disciplines among Centers of Excellence, with physical therapy being the most common referral.
  • Psychosocial and mental health therapies may be underutilized ― in terms of physician’s referrals and patients seeing a mental health professional.  
  • There were significant differences in clinical outcomes across care models.

These findings show the need to expand our understanding of how different care models and therapies (such as occupational, physical and psychological) affects care and outcomes for people with PD.

→ This study was shared at the 2019 World Parkinson Congress in Kyoto, Japan. Authors: Clarissa Martinez-Rubio, PhD, Jennifer G. Goldman, MD, MS, Samuel S. Wu, PhD, Hanzhi Gao, Fernando Cubillos, MD, Nadia Romero and Veronica L. Todaro, MPH.

Relationships of Gender, Care Models and Neuropsychiatric Symptoms In Parkinson’s Disease

In this study, the Parkinson’s Foundation compared complementary health therapies across the three care models mentioned above in relation to the difference between men and women living with Parkinson’s, their outcomes, management of the neuropsychiatric symptoms ― specifically depression and psychosis.

Using data from the Parkinson’s Outcomes Project, we studied 10,058 people with PD seeking treatment at 22 Parkinson’s Foundation centers who experienced depression or psychosis, referred to a psychologist or psychiatrist and receiving antipsychotic or antidepressant medication. The study showed that:

  • Depression and psychosis are experienced and treated differently depending on gender.
  • Psychosocial and mental health therapies may be underutilized ― in terms of physician’s referrals and patients seeing a mental health professional.  
  • Significantly more women than men were identified with depression, self-reported limitation of activity due to depression and received antidepressant medication.
  • People with Parkinson’s who sought care at a center with an external allied healthcare team were significantly more likely to be hospitalized due to mental health, gastrointestinal issues and DBS-related symptoms.

These findings show the need to expand our understanding of how different care models and usage of complementary therapies affects care and outcomes for people with PD, as well as, the need to expand our understanding on how gender affects these factors

→ This study was shared at the 2019 International Congress of Parkinson’s Disease and Movement Disorders in Nice, France. Authors: Jennifer G. Goldman, MD, MS, Clarissa Martinez-Rubio, PhD, Samuel S. Wu, PhD, Hanzhi Gao, and Veronica L. Todaro, MPH.

Learn more about the Parkinson’s Outcomes Project at Parkinson.org/Research.

Raise Awareness

Speech Therapy and Parkinson's: Do I have a speech problem?

Woman drinking water from a glass

About 89 percent of people with Parkinson’s disease (PD) experience speech and voice disorders, including soft, monotone, breathy and hoarse voice and uncertain articulation. Speech disorders can progressively diminish quality of life for a person with PD. The earlier a person receives a baseline speech evaluation and speech therapy, the more likely he or she will be able to maintain communication skills as the disease progresses. Communication is a key element in quality of life and positive self-concept and confidence for people with PD.

Speech and swallowing issues in Parkinson’s can occur for various reasons. The top three issues include:

  1. Directly related to the disordered motor system that accompanies PD, including rigidity, slowness of movement and tremor.
  2. Change in sensory processing that is related to speech. It is believed that people with PD may not be aware that their speech is getting softer and more difficult to understand.
  3. Another cause of this condition is that people with PD may have a problem with “cueing” themselves to produce speech with adequate loudness.

Tell your doctor If you are experiencing any changes in your speech or voice. Ask for a referral and a prescription for a speech evaluation a treatment. If you have not noticed changes in your speech, but a spouse, care partner or friend has pay attention to their comments. The sooner you get a speech evaluation and start speech therapy, the better.

Speech / Voice infographic

Take Our Quiz

Many people with Parkinson’s have these statements to describe their voices and the effects of their voices on their lives.

Choose the response that indicates how frequently you have the same experience (0 = never, 1 = almost never, 2 = sometimes, 3 = almost always, 4 = always).

To find your score, add up your answers. A score of 10 or higher indicates you might have a speech or voice problem that is affecting your quality of life and you should ask for a referral to a speech pathologist.

The quiz is no longer available.

What next?

The Parkinson’s Foundation Helpline can help you find a nearby speech pathologist who has experience in Parkinson’s. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636).  

Looking for ways to improve your speech and communication? Check out this blog article for ways you can improve your speech starting now. 

For more information about Speech Therapy and Parkinson’s check out our Speech Therapy Fact Sheet and other resources at Parkinson.org.

Science News

Alpha-synuclein & DNA: The Ties That Bind

Parkinson's Foundation Science News blogs

Parkinson’s disease (PD) is neurodegenerative disorder characterized, in part, by the clumping of the protein alpha-synuclein. These clumping proteins are called Lewy Bodies that can be found in an area of the brain stem where dopamine cells die. However, we do not know exactly how the two are connected. Researchers believe that better understanding this connection would help us develop optimal targeted therapies to treat PD. 

A study published in Nature, “Alpha-synuclein is a DNA binding protein that modulates DNA repair with implications for Lewy body disorders” (Schaser et al., 2019), wondered if healthy alpha-synuclein help repair DNA damage caused by double-strand breaks (DSBs). DSBs can be the result of many things, such as environmental exposure to irradiation and other chemical agents. However, DNA damage is also a normal result of cells undergoing constant wear-and-tear. In fact, DNA damage happens in human cells thousands of times per day. Fortunately, cells repair damaged DNA on their own.

DNA

However, what if the unhealthy alpha-synuclein (which becomes Lewy Bodies) causes the loss of DSB repair, leading to healthy cells dying? While this study was not PD-specific, what if it were dopamine-producing cells that were not getting repaired and dying? The researchers conducted a series of sophisticated tests in both living mouse brains and human cells to see if this chain of events was taking place.

First, using a powerful microscope (or imaging techniques) the researchers confirmed that healthy alpha-synuclein appear exactly where the DSBs are located. However, the test did not show the cause, so further experiments were required.

Researchers then measured the amount of DSBs in healthy human cells and human cells where alpha-synuclein was completely removed (known as knock-out cells). To cause DNA breaks, they exposed the cells to a chemotherapy drug, called bleomycin. The researchers found that the cells without alpha-synuclein (knock-out cells) had higher levels of DSBs compared to healthy cells, suggesting that alpha-synuclein plays a role in repairing DSBs. They also found that the healthy human cells repaired DSBs more rapidly compared to the knock-out cells, again supporting the role of alpha-synuclein in aiding DNA repair.

Next, researchers used a strong laser, which they knew would damage the DNA and cause DSBs, to see if healthy alpha-synuclein are recruited there to help seal the breaks. They tested this in two groups of live mice and live human cells: 1. healthy and 2. Group with the disease that carry the abnormal form of alpha-synuclein. Lastly, they tried adding healthy human alpha-synuclein back into the mice without alpha-synuclein to see if it might restore the normal DNA damage response.

Results

  • In both human cells in a dish (in vitro) and living mouse brains (in vivo) alpha-synuclein was present in the exact same location as the DNA repair proteins, suggesting alpha-synuclein binds directly to DSBs, and helps repair those breaks.
  • In both healthy human cells and living mouse brains, the laser-induced DSBs, triggered alpha-synuclein to move to the site of DNA damage.
  • In diseased human cells and mice carrying the abnormal form of alpha-synuclein, the laser-induced DSBs, impaired alpha-synuclein from moving to the site of DNA damage.
  • Removing alpha-synuclein in human cells lead to increased DSB levels after receiving chemotherapy drug (bleomycin) treatment, and a reduction in the ability to repair these DSBs, compared to healthy human cells.
  • Removing alpha-synuclein in mice (the knock-out mice) also resulted in increased DSBs, following bleomycin treatment.
  • Giving healthy human alpha-synuclein to the alpha-synuclein knock-out mice, restored the mice cells’ DNA damage response to normal levels.

What Does This Mean?

This study suggests that the abnormal clumping of alpha-synuclein cells into the form of Lewy Bodies diminishes the available healthy alpha-synuclein to do its job of assisting in DNA damage repair (DSBs). This lack of repair triggers the cell death process, because the cell is damaged to the point where it can no longer function normally.

Of note, while this study was not designed only for Parkinson’s, these finding may offer insights as to how abnormal alpha-synuclein clumping leading to Lewy Bodies may result in the increase of cell death of dopamine-producing cells. These findings could inform the development of new PD treatments that target alpha-synuclein-mediated DNA repair mechanisms.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the Parkinson’s and LID in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).

Advancing Research

Meet the Researcher: Protein May Predict Dementia Progression in Parkinson's

studying in a lab

Over the next three years the Parkinson’s Foundation will invest more than $50 million to Parkinson’s disease (PD) research and clinical care. At the heart of our research initiatives are scientists and researchers who have received Foundation awards to improve our understanding of Parkinson’s, which will ultimately lead us to a cure.

The dementia that many people with Parkinson’s disease develop greatly affects both those who experience it as well as their families. Parkinson’s-related dementia is associated with significant increases in illness and death compared with people who have Parkinson’s without dementia. There are currently no tests to determine which people with Parkinson’s will develop dementia and/or how quickly they will do so.

Liana Rosenthal, MD, PhD

About 80% of people with Parkinson’s develop dementia by about 15 years after their PD symptoms appear. However, there is a wide variation. In some people, dementia begins as early as a few years after PD symptoms start. Other people have near-normal cognition after more than 15 to 20 years of PD motor symptoms. This difference may be related to different strains of the protein alpha-synuclein (α-synuclein), which is central to Parkinson’s.

Liana Rosenthal, MD, PhD, at Johns Hopkins University School of Medicine, received a Parkinson’s Foundation Clinical Research Award to study markers of dementia in people with PD. Her goal is to determine whether a specific, less toxic strain of α-synuclein is associated with slower progression of dementia.

To accomplish this, she will study α-synuclein from the fluid in the brain and spinal cord from people with Parkinson’s with and without dementia. Identifying progression markers for PD-related dementia, might allow us to improve the function and health of people with Parkinson’s.

Parkinson's Foundation Clinical Research Awards help facilitate the development of clinician scientists, ensuring that promising early career scientists stay in the PD field to help us solve, treat and end this disease. 

What's Next: Reporting Our Findings

Parkinson’s Foundation research awards fund Parkinson’s studies than can span up to three years. Scientists submit yearly progress reports to the Parkinson’s Foundation, and we report findings once the studies have concluded. Stay up to date with our latest research findings at Parkinson.org/Blog.

Raise Awareness

10 Ways We Helped Our Parkinson’s Community This Year

Together, we made life better for people in our Parkinson’s community in 2019. Your support allowed us to launch new, exciting initiatives that are changing lives, while funding critical research and local classes tailored to people with Parkinson’s disease (PD). With your support, we are reaching more people living with this disease in the U.S. and are closing the gap to help the 60,000 Americans diagnosed every year.

Thanks to YOU, we were able to accomplish the following in 2019:

  1. Launched First-of-its-Kind Free Genetic Testing Initiative
    We launched PD GENEration: Mapping the Future of Parkinson’s Disease, a national initiative that offers free genetic testing for clinically relevant PD-related genes and free genetic counseling. We are excited to reach our goal of testing and providing genetic counseling for up to 15,000 people with PD.
     
  2. Funded $12.2 Million to Further Parkinson’s Research
    This was an impactful year for Parkinson’s research. We established four new Research Centers that will receive a total of $8 million to launch PD-specific research studies. We also  simultaneously funded $4.2 million across 46 research grants that support the work of promising scientists in the PD field, cutting-edge clinical trials and fellowships.
     
  3. Designed Program for People Newly Diagnosed with Parkinson’s
    With a focus to reach the 60,000 people who are newly diagnosed with PD each year in the U.S., Newly Diagnosed: Building a Better Life with Parkinson's Disease aims to close the gap between diagnosis and knowing where and how to find the right information and resources to live better with PD. Order or download the free Newly Diagnosed kit. 
  4. Shared Research Findings at the 5th World Parkinson Congress
    In June, we enthusiastically joined our international community at the 5th World Parkinson Congress (WPC) in Kyoto, Japan, where our PD experts shared 10 research posters.
     
  5. Expanded our Centers of Excellence Care Network
    Every year, we hope to bring expert care to more people with PD. In 2019, we expanded our Center of Excellence global network to include three new centers. Centers of Excellence are a medical center with a specialized team who provide expert Parkinson’s care. Find a Center of Excellence in your area.
     
  6. Partnered with Michael J. Fox Foundation for Parkinson’s Research to Report New Economic Burden and Host Policy Forum
    In 2019, we collaborated with the Michael J. Fox Foundation (MJFF) to publish that the economic burden of Parkinson’s is nearly $52 billion every year. Together, we also hosted the 2019 Parkinson’s Policy Forum, bringing more than 150 advocates from across the U.S., along with leading experts in PD research to advocate for our community.
     
  7. Group of people exercising

    Granted $1.5 Million to Local Communities for Parkinson’s Programs
    We proudly funded $1.5 million throughout 118 community-based grants that provide education and outreach programs, along with local research initiatives, that address unmet needs in the PD community.

  8. Issued First Patient-Centered Research Agenda for Women with PD
    Recognizing long-standing gender disparities in Parkinson’s research and care, our Women and Parkinson’s Initiative created the first patient-centered action agenda to maximize quality of life for women with Parkinson’s.
     
  9. Appointed Aware in Care Ambassadors
    In 2019, we appointed our first-ever  Aware in Care Ambassadors, a volunteer group to help distribute Aware in Care kits that serve to bolster best practices in treating patients with Parkinson’s disease to both patients and healthcare providers.
     
  10. Designed New Online Nurse Course
    With the prevalence of PD expected to increase in the coming years, we wanted to provide more professional education opportunities for nurses. In 2019, we launched a new online course for nurses who deliver care throughout all stages of Parkinson’s. 
2019 accomplishment timeline

As much as we accomplished in 2019, we are committed to furthering our reach and impact in 2020 to help even more people live better with Parkinson’s. Your continued support is the only way we can make that happen. Thank you.

Advancing Research

Parkinson’s Foundation Research Advocates Influence Parkinson’s Funding

microscope

Parkinson’s Foundation Research Advocates were the first people with Parkinson’s disease (PD) to help guide the grant review process for the Department of Defense (DoD) Parkinson’s Research Program. The program supports research to understand, prevent, diagnose and treat Parkinson’s disease.

This year, Michael S. Fitts, MLIS, a Parkinson’s Foundation Research Advocate participated as a consumer reviewer and voting member to help determine how $16 million will be spent on Parkinson’s research in 2019. Consumer reviewers, like Michael, are asked to represent a collective view of people with PD by commenting on the impact of the research on issues like diagnosistreatment and quality of life.

michael fitts research advocate

"Since I began my advocacy work within the PD community, I’ve been continuously blessed with opportunity after opportunity to touch the lives of diverse individuals from all walks of life,” said Michael Fitts. “Most recently I received a nomination from the Parkinson’s Foundation and was selected to serve on the Congressionally Directed Medical Research Programs’ (CDMRP), Parkinson’s Research Program (PRP) as a consumer advocate, as a full voting member."

DoD studies involve research that, if successful, impacts not only veterans with Parkinson’s, but the entire PD community. The research also focuses on understanding the mechanisms of PD. Consumer advocates and scientists have worked together in this unique partnership since 1997.

Colonel Stephen J. Dalal, Director of the CDMRP expressed his appreciation for the consumer advocate’s perspective during these scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process,” Col. Dalal said. “They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent. The collaboration of consumer advocates alongside the scientists’ subject matter expertise is truly a unique collaboration that is difficult to find in most medical research programs.”

Scientists applying propose to conduct innovative research to understand, prevent, diagnose and treat Parkinson’s disease ― for everyone with PD, including servicemembers and veterans. The Parkinson’s Research Program fills important gaps in the Parkinson’s research field by supporting groundbreaking, high-risk, high-gain research while encouraging out of the box thinking. Grant reviewers like Michael provide the critical perspective of someone living with PD when reviewing these applications.

Since 2015, Parkinson’s Foundation Research Advocates alongside scientists have been key decision makers in directing nearly $100 million of DoD research funding through the grant review process. Parkinson’s Foundation Research Advocates Paul Zimmet, A.C. Woolnough, Fred Woodlief, Samantha Erwin, Jay Phillips, Bel Broadley and Maria De Leon have all participated in DoD review. 

Interested in playing a key role in Parkinson’s researchLearn more about becoming a research advocate.

Advancing Research

What's Hot: Nilotinib Study Results Show People with Parkinson’s Disease Should Pass on This Drug

boxes of pills

The past two weeks have offered more definitive information on Nilotinib (Tasigna), a drug already approved for treatment of leukemia, as a potential treatment for Parkinson’s disease (PD) symptoms. On December 16, JAMA Neurology published the results of a Phase II safety trial ― a study that tests the effectiveness of a drug or treatment in a larger group of people. Study findings revealed that Nilotinib had more adverse events than the placebo (a pill not containing an active drug) but was reasonably safe. An accompanying editorial and podcast discuss the narrowing path forward for this drug in Parkinson’s disease as the clinical effects were unfortunately not robust.

Northwestern University, a Parkinson’s Foundation Center of Excellence, and the Parkinson Study Group, in a study led by Tanya Simuni, MD, in the NILO-PD study (25 sites) reported that Nilotinib was safe and tolerable but did not “exert a clinically meaningful benefit or biological effect to benefit those with Parkinson's disease.”

Though there may be a potential future for cancer drugs called C-Abl inhibitors to be repurposed for Parkinson’s disease, we are recommending that people with Parkinson’s and families pass on this particular drug at this time. Though it is reasonably safe, it is still a drug used as a cancer treatment with more adverse effects than in the placebo group. The data on the medication’s effectiveness was weak at best and does not justify the risk for treatment. There was an accompanying editorial in JAMA Neurology and a podcast on the narrowing path forward for this and other similar drugs found here.

Study authors address the idea of “reasonably safe,” biomarkers, clinical outcomes and implications for future clinical trials. Though the Parkinson Study Group Trial co-sponsored by the Michael J. Fox Foundation results have not been published, the trial was stopped. We expect to see the full publication in the next few months.

Previously, Nilotinib was tested for safety in a phase I clinical trial ― a trial where researchers test a new drug or treatment in people for the first time ― on a small group of participants with Parkinson’s several years ago at Georgetown University Hospital, a Parkinson’s Foundation Center of Excellence. The original study was small and did not include a placebo.

While Nilotinib may not be the answer the PD community was looking for, the Parkinson’s Foundation firmly believes research breakthroughs can happen at any moment, which is why the Foundation continues to fund critical research, from clinical trials to new initiatives

Dr. Michael S. Okun

Learn More

Find out more about Parkinson’s and Nilotinib in the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Norman Fixel Institute for Neurological Diseases. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.

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