Tracking Parkinson’s disease (PD) progression is challenging, and doctors currently rely on how a person’s symptoms change over time. This method is difficult because symptoms vary from person to person and can fluctuate, making it hard to evaluate if treatments are helping.

For other brain diseases like Alzheimer’s, scientists have developed small molecules that can attach to disease-related protein clumps and make them visible on brain scans such as PET (positron emission tomography). These imaging tools allow researchers and clinicians to see where harmful proteins are building up in the brain, providing a clearer way to track disease progression and test therapies. In short, these imaging tools can act as a biomarker for the disease.

Sarah Shahmoradian, PhD, recipient of a Parkinson’s Foundation Impact Award, is exploring whether a similar biomarker tag could work for Parkinson’s. Working with collaborators at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, Dr. Shahmoradian is studying a specially designed small molecule that appears to bind to toxic forms of the protein connected to Parkinson’s (called alpha-synuclein). 

“Currently, we do not have a PET tracer that reliably marks clusters of the protein alpha-synuclein when it goes bad, so we can’t tell when these clusters are starting to grow or when they are starting to spread in the brain,” said Dr. Shahmoradian.

Having a Parkinson’s-specific PET tracer to track the alpha-synuclein protein would help PD doctors and care teams:

• Detect Parkinson’s earlier

• Monitor how PD spreads over time

• Evaluate if experimental therapeutics are reducing the clustering and accumulation over time

• Distinguish Parkinson’s from other conditions with overlapping symptoms

From her lab at the University of Texas Southwestern Medical Center in Dallas, Dr. Shahmoradian will use high-resolution imaging methods — developed through her earlier research, which was supported by a Parkinson’s Foundation Stanley Fahn Junior Faculty Award in 2022 — to see precisely how this new molecule attaches to alpha-synuclein. Understanding this interaction at the molecular level will help scientists fine-tune the tracer for future clinical imaging.

The next step is to adapt the molecule so it glows under the microscope. By applying it to neurons grown in the lab that model Parkinson’s disease, or to slices of PD brain tissue, Dr. Shahmoradian and her team hope to track where alpha-synuclein clumps appear and how they move inside cells.

If successful, this work will demonstrate that the molecule can serve as a powerful diagnostic and research tool for Parkinson’s.

“There is real momentum in Parkinson’s disease research right now. We understand more about the problematic protein alpha-synuclein now than we did a decade ago. Cell models are becoming increasingly sophisticated and there are newer imaging agents and disease-modifying therapies on the horizon.” - Dr. Shahmoradian

Dr. Shahmoradian believes her work brings hope to the Parkinson’s community because through it, researchers like herself can look at problematic alpha-synuclein clumps at extremely high resolution to figure out exactly where the protein goes wrong.

She is grateful for the community she has found through the Parkinson’s Foundation, and the connections she has made with other researchers who are also focused on finding a cure for Parkinson’s disease.

“This research would not be possible without the Foundation’s support, and the donors who made these grants a reality. Your investment is not abstract. You are helping support experiments right now, in real time, that help diagnose and treat Parkinson’s disease. You are accelerating and empowering scientists like myself toward the shared common cause of curing Parkinson’s disease,” said Dr. Shahmoradian.

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

Este blog se publicó originalmente el 3 de agosto de 2021.

A través de su estudio global, PD GENEration: Impulsado por la Parkinson’s Foundation, la Parkinson’s Foundation ofrece a las personas con enfermedad de Parkinson (EP) acceso a información genética sobre su enfermedad y oportunidades para tomar decisiones informadas. Además, contribuye al avance de nuevos tratamientos para la EP. La consejería genética, disponible en inglés y español, es un componente fundamental y distintivo de este estudio.

Las consejeras genéticas certificadas Jeanine Schulze, MS, CGC, y Jennifer Verbrugge, MS, CGC, forman parte del Department of Medical and Molecular Genetics at the Indiana University School of Medicine (Departamento de Genética Médica y Molecular de la Facultad de Medicina de la Indiana University), un Centro de Excelencia de la Parkinson’s Foundation. Ambas han participado en diversas iniciativas de investigación relacionadas con las pruebas genéticas en la enfermedad de Parkinson, incluyendo PD GENEration.

Su colaboración aborda preguntas clave que destacan la importancia de identificar factores biológicos en la enfermedad de Parkinson en personas que viven con esta condición, así como el papel fundamental de la consejería genética en la interpretación de los resultados de las pruebas genéticas.

P: ¿Por qué son importantes las pruebas genéticas para las personas con Parkinson?

R: Las personas con Parkinson pueden solicitar pruebas genéticas por varias razones. Algunas personas desean comprender mejor por qué desarrollaron la enfermedad de Parkinson o saber más sobre su enfermedad en particular. A otras les preocupa el riesgo para su familia.

Las pruebas genéticas pueden identificar si un cambio en un gen, conocido como variante genética, contribuyó al desarrollo de la enfermedad de Parkinson. Si se identifica una variante genética, esta información puede ayudar a comprender cómo se hereda dentro de la familia, si otros miembros podrían estar en riesgo y cuál podría ser ese nivel de riesgo. En algunos casos, los resultados también pueden aportar información sobre posibles síntomas, opciones de tratamiento o la progresión futura de la enfermedad.

Identificar una variante genética en una persona con Parkinson también puede abrir la puerta a estudios de investigación, como ensayos clínicos. Las personas con Parkinson que son portadoras de variantes genéticas pueden desempeñar un papel fundamental a la hora de ayudar a los investigadores a conocer mejor las causas del Parkinson y cómo podríamos tratarlo. Existen diferentes tipos de estudios de investigación que buscan personas con variantes genéticas específicas; algunos evalúan nuevos tratamientos, mientras que otros realizan un seguimiento de las personas a lo largo del tiempo para conocer mejor cómo las variantes genéticas influyen en los síntomas y la progresión del Parkinson.

P: ¿Qué hace una consejera genética?

R: Una consejera genética brinda información, orientación y apoyo emocional a las personas con enfermedad de Parkinson y a sus familias. Durante la consejería genética, ayuda a comprender el historial biológico, explica las opciones de pruebas genéticas y guía a las personas para tomar decisiones informadas basadas en sus resultados.

P: ¿Cómo está estableciendo PD GENEration un estándar en los informes genéticos y la consejería genética específicos para la enfermedad de Parkinson?

R: PD GENEration establece un estándar al ofrecer un enfoque integral y centrado en la persona participante. El estudio garantiza que todas las personas reciban consejería genética para comprender sus resultados, junto con informes genéticos claros y clínicamente relevantes. Además, utiliza pruebas genéticas de alta calidad que analizan las principales variantes genéticas asociadas con la enfermedad de Parkinson, incluidas aquellas relevantes para ensayos clínicos y oportunidades de investigación, facilitando así la participación informada en estudios futuros.

P: ¿En qué se distingue la consejería genética de PD GENEration?

R: Este estudio ofrece acceso sin costo a pruebas genéticas y consejería genética para personas con enfermedad de Parkinson en todo Estados Unidos. La opción virtual permite participar a personas que anteriormente podían estar demasiado lejos de un centro o no podían desplazarse.

Las personas participantes pueden resolver sus dudas con profesionales altamente especializados en la enfermedad de Parkinson y en genética. La consejería genética se ofrece en inglés y en español.

P: ¿Qué deben saber las personas sobre las pruebas genéticas en casa?

R: Existen diferentes tipos de pruebas genéticas en casa. Algunas, conocidas como pruebas genéticas directas al consumidor, se realizan sin la participación de un médico o profesional de la salud. Estas pruebas no siguen las mismas directrices que aquellas solicitadas a través de un profesional clínico y, en muchos casos, pueden ofrecer información limitada o incompleta.

En PD GENEration, la prueba genética en casa se solicita a través de un profesional de la salud del estudio. El equipo envía por correo un kit con instrucciones, y el personal de coordinación brinda orientación durante una visita por videoconferencia sobre cómo tomar la muestra genética.

La muestra se envía a un laboratorio clínicamente certificado que realiza el panel de pruebas genéticas de PD GENEration. Esta prueba ha sido cuidadosamente diseñada y los resultados son analizados de forma rigurosa. La información genética de cada participante está protegida tanto por el estudio como por el laboratorio.

Los resultados se comparten a través de una sesión de consejería genética con un profesional capacitado, quien puede responder preguntas y explicar cualquier aspecto relevante.

P: ¿Qué puede esperar una persona con enfermedad de Parkinson al reunirse para una sesión de consejería genética?

R: Una sesión de consejería genética puede realizarse de forma presencial, por teléfono o mediante videoconferencia. La duración suele variar entre 20 y 60 minutos, dependiendo del tipo de visita, el número de preguntas y la complejidad de las pruebas o de los resultados.

Durante la sesión, se explica cómo la genética puede influir en la enfermedad de Parkinson, se recopilan antecedentes familiares y se analiza cómo los factores genéticos y/o los resultados de las pruebas pueden tener implicaciones para otras personas en la familia.

Para obtener más información sobre cómo participar en PD GENEration, ya sea en persona o desde casa, visite Parkinson.org/PDGENEration o llame a la línea de ayuda de la Parkinson’s Foundation al 1-800-4PD-INFO.

Diagnosing Parkinson's disease (PD) and dementia with Lewy bodies (DLB) remains a challenge. There is no single definitive test, and misdiagnosis can lead to ineffective treatments. That is why finding reliable biomarkers — measurable signs in the body that can indicate disease — is a major focus of PD research today. Biomarkers hold the promise of earlier, more accurate diagnosis, tracking disease progression and evaluating whether treatments are working.

PD and dementia with Lewy bodies are both Lewy body disorders. They both lead to the abnormal buildup of a misfolded protein called alpha-synuclein and the loss of dopamine. A protein called DDC plays a role in producing dopamine, so in Lewy body disorders such as PD, DDC levels change — making it a potentially useful signal (or biomarker) that the disease is present.

A new study published in Nature Medicine — featuring former Parkinson's Foundation awardee Giovanni Bellomo, PhD — highlights DDC as a promising new biomarker. Using cerebrospinal fluid collected through a spinal tap, the research team developed new tests to measure DDC levels and confirmed their accuracy across more than 1,100 people.

This study adds to a growing wave of biomarker discoveries that are transforming how we understand and diagnose PD. Last year, a study showed that a skin biopsy test could reliably detect phosphorylated alpha-synuclein (another potential biomarker) in people with PD and related disorders, which is now commercially available to help support diagnosis.

Together, these advances are moving us closer to an era where biological tests might offer earlier and more precise diagnosis.

Study Results

The researchers developed two new tests to measure DDC levels in cerebrospinal fluid and then confirmed their accuracy across more than 1,100 people. This included people with PD, dementia with Lewy bodies, Alzheimer’s disease and people without these conditions.

Overall, DDC levels in spinal fluid were significantly and consistently higher in people with PD and dementia with Lewy bodies — up to 2.5 times higher compared to people without these diseases and nearly twice as high as those with Alzheimer’s disease. The test accurately distinguished PD and dementia with Lewy bodies with 94% to 97% accuracy. It also differentiated these conditions from Alzheimer's disease.

Interestingly, people with Parkinson’s movement symptoms had higher DDC levels, but those levels didn’t increase as symptoms worsened. This suggests DDC may be most helpful for confirming a diagnosis rather than tracking disease progression.

In brain tissue examined after death, higher DDC levels measured during life matched up with greater buildup of alpha-synuclein — the hallmark protein involved in PD and DLB — reinforcing DDC’s connection to the underlying biology of these diseases.

Highlights

• A new test uses the protein called DDC as a biomarker to help identify PD with the hope that it could be a diagnostic tool one day.

• DDC levels in spinal fluid were significantly higher in people with PD and dementia with Lewy bodies —up to 2.5 times higher than in people without these diseases and nearly twice as high as in those with Alzheimer’s disease.

• Overall, the tests were accurate at distinguishing PD and dementia with Lewy bodies from people without these diseases and reliably differentiated these conditions from Alzheimer’s disease. These results suggest these tests could eventually be useful diagnostic tools for doctors. 

• People with symptoms (for example, movement problems in PD) had higher DDC levels. However, DDC levels didn't increase as symptoms got worse.

• In brain tissue examined after death, higher DDC levels measured during life matched up with greater buildup of alpha-synuclein.

What Does This Mean?

This research points to a potential new biomarker — a protein called DDC — that may help diagnose Parkinson’s and dementia with Lewy bodies (DLB) more accurately and earlier than current methods.

The DDC test showed high accuracy in distinguishing PD or DLB versus people without these conditions, as well as compared to people with Alzheimer’s disease. This accuracy is crucial for a neurological diagnostic test, especially for conditions where misdiagnosis is common due to overlapping symptoms and a lack of established biomarkers.

In the near future, this could help people be diagnosed with Parkinson’s and DLB more accurately and faster, which can dramatically improve treatment outcomes. However, in its current form, the results of this study suggest that the DDC biomarker may be best for confirming a diagnosis, but less helpful for tracking how the disease develops.

What Do These Findings Mean for People with Parkinson’s Right Now?

The DDC biomarker is not yet available as a clinical test. However, as we saw with the skin biopsy test (Syn-One), biomarker advances can quickly move from a research study to being used in-clinic. Additionally, considering that very few tests are 100% accurate, the concept of having multiple different biomarkers available to identify PD will help validate diagnoses and improve rigor in the field.

Studies like this one could help bring peace of mind to people with Parkinson’s and support diagnosis based on biological evidence, not only a doctor’s assessment.

For people with Parkinson’s, this study reinforces that the symptoms they experience reflect measurable brain changes in the brain. People who are concerned that they might have Parkinson’s disease or dementia with Lewy bodies should talk to their doctor.

Learn More

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

• Understanding Parkinson’s Biomarkers

• A Skin Test Could Detect Parkinson’s and Related Diseases

• Lewy What? Explaining Lewy Body Dementia

• Lewy Body Dementia Association

When you’re living with Parkinson’s disease (PD), the decisions made on Capitol Hill and in state capitals across the country can directly shape daily life. Whether it’s the funding that drives breakthrough research, the policies that determine whether you can access a specialist, or the environmental protections that could prevent PD in the first place, policy is personal.

Last month, that truth came to life in a powerful way. From March 15-18, more than 300 advocates from across the country gathered in Washington, D.C. for the 2026 Parkinson’s Policy Forum, an event that united people living with PD, care partners, clinicians, researchers and advocates to carry the message of the Parkinson’s community to Congress.

The Forum was an inspiring reminder of what we can accomplish when we speak with one voice. While the Forum has wrapped, the momentum it generated is just beginning. The policy priorities that advocates championed on Capitol Hill affect every person living with Parkinson's and there are still powerful ways to make your voice heard.

Here are five key Parkinson’s policy areas where your voice can make a real difference.

1. Implementation of the National Parkinson’s Project

The National Parkinson’s Project is a historic milestone: the first-ever federal initiative dedicated to Parkinson's disease. Congress passed a law to create the National Parkinson’s Project in 2024, but that is only the beginning. Implementation requires continued pressure and advocacy to ensure the initiative moves forward without delay.

The Parkinson's Foundation is working to protect this landmark project and build momentum as the government moves to put it into action. That means urging the Department of Health and Human Services to seat the National Parkinson’s Project Advisory Council so they can begin their vital work to help prevent, diagnose, treat and ultimately cure Parkinson’s and recommendations to improve quality of life for those living with PD. This project represents a generational opportunity, and advocates like you help keep it on track.

2. Increased Investment for PD Research

We are closer than ever to developing treatments that could slow or stop Parkinson's, not just manage its symptoms. But that progress depends on sustained investment. Federal support for PD research has not kept pace with the rapid growth of the disease, and funding uncertainty puts critical breakthroughs at risk.

The Parkinson's Foundation is advocating for increased investments, including $600 million a year in National Institutes of Health-funded Parkinson's research, as well as complementary investments at the state level that build on and expand what federal funding makes possible.

Every dollar invested in research brings us one step closer to a cure — and every advocate who makes the case to a lawmaker helps secure that funding.

3. Timely, Affordable and Quality Parkinson’s Care

Parkinson's is the fastest-growing neurodegenerative disease, with 90,000 new diagnoses every year. Yet access to quality care is increasingly out of reach for many people. Shortages of movement disorders specialists mean long travel distances. Coverage gaps and unpredictable costs create added stress. Quality of care varies widely depending on where you live.

The Parkinson’s Foundation supports policies that change this reality by making it easier to diagnose and treat PD, stabilizing and expanding telehealth coverage to reach people wherever they are, and ensuring robust public health programs that support both care and research. Quality Parkinson’s care should not be determined by your zip code.

Whether it’s expanding telehealth access or strengthening Medicare coverage, these policy changes have a direct impact on your ability to get the care needed to live well with PD.

4. Address Environmental Health Threats Linked to Parkinson’s

The causes of Parkinson’s are complex, but research has linked environmental risks — including certain chemicals like paraquat and trichloroethylene (TCE) — to an increased risk of developing PD. Even though paraquat has been banned in more than 70 countries, including China, this pesticide is still sold and used in the U.S.

The Parkinson’s Foundation is pushing the Environmental Protection Agency and state governments to end the use of paraquat in the U.S. This policy change could prevent countless future cases of PD, particularly in rural communities where pesticide exposure is most common.

Policy change can protect future generations from ever receiving a Parkinson's diagnosis. That is a powerful thing to advocate for.

5. Education: Access to PD Information

Knowledge is power, especially when it comes to early diagnosis and living well with Parkinson’s. Yet too many people with PD, their families, and even their healthcare providers lack access to timely, high-quality, tailored information about the disease.

The Parkinson’s Foundation is advancing policy changes that improve PD education for people with Parkinson’s, care partners and healthcare professionals. Better-informed healthcare professionals mean earlier diagnoses and better care. Better-informed patients and families mean more confident, empowered decision-making at every stage. Access to PD information also support prevention, helping communities recognize risk factors and take action before a diagnosis occurs.

People with Parkinson’s are at the center of everything we do, and ensuring they have the information they need is one of the most meaningful ways policy can improve lives right now.

Your Voice Can Change Everything

There is a direct connection between the actions we take today and the future we want to see. The research funding secured this year can become the new treatment option available in five years. The telehealth policy passed today means your neighbor in a rural county can see a specialist next month. The paraquat ban advocated for now could mean one fewer diagnosis in your community.

Ready to make a difference? Visit our Advocacy Center to join our Advocacy Network, contact your representatives, and take action on the issues that matter most to the PD community today.

The economic burden of Parkinson’s disease (PD) and atypical parkinsonism (AP) has grown faster than researchers previously estimated, reaching nearly $82.2 billion in 2024. Several Parkinson’s organizations, including the Parkinson’s Foundation, and industry partners backed and reported these findings in a new study.

This new study, The Economic Burden of Parkinson’s and Atypical Parkinsonism in the United States, builds upon similar research conducted previously on 2017 data, offering valuable updates and insights into how the economic burden has changed in the last seven years.

Read the press release

Key findings from the study include:

• There were an estimated 1.1 million people with PD living in the U.S. in 2024

• $23.8 billion is attributable to direct medical costs, including hospitalizations, outpatient care and medications.

• $58.4 billion reflects indirect and non-medical costs, including lost income, disability and unpaid caregiving.

"It is alarming to see the societal cost to treat PD continue to grow. This new study further underscores the extreme financial burden to not only society, but to the families of those living with PD.  Parkinson’s remains one of the most expensive diseases to care for yet the U.S. government invests less than 1% of this cost in searching for better treatments and cures through research. Disease-modifying breakthroughs are within reach, that’s why together with the Parkinson’s community, the Parkinson’s Foundation is urging for an increased investment of at least $600 million annually for Parkinson’s research at NIH," said James Beck, PhD, Chief Scientific Officer at the Parkinson's Foundation. 

Direct Medical Costs of PD Remain Steady

To calculate direct medical costs attributed to PD, the study authors compared average medical expenses by those with PD against a similar population (age, gender, ethnicity, insurance coverage) without PD. The difference between the two amounts was determined to be the excess medical cost due to PD.

In 2024, the average direct costs of PD were $18,859 per person across all age groups. These amounts are slightly lower than the average direct cost calculated in 2017, which was $24,439 per person at that time.

However, this difference is primarily due to increased medical expenses for the non-PD comparison group, possibly because of new and popular high-cost treatments such as GLP-1 agonists. Overall medical costs have increased 17% in the past 7 years, and the costs of PD may have only grown slightly slower than that.

Non-Medical and Indirect Costs Have Significantly Grown Since 2017

While direct medical costs of PD have remained relatively steady in the past seven years, estimates of non-medical and indirect costs have grown nearly twice as much in that time.

Non-medical costs related to PD, such as daily non-medical care and home or vehicle modifications, have more than doubled in the past decade, with the average person with PD paying $15,614 in non-medical expenses in 2024.

This dramatic increase is due in part to the study authors identifying new major contributors to economic burden, including housekeeping services, financial and legal planning services and accessible home purchase expenses. They also classified out-of-pocket expenses not covered by insurance such as counseling, supplies and therapeutic activities as costing people with PD on average $4,675 per person in 2024.

Indirect costs include the loss of wages or earnings due to the reduced ability to work attributable to PD (reduced hours, sick time spent, etc.). These costs increased 69% since 2017, going from $7,387 to $12,554 per person per year.

Taken altogether and including indirect cost burdens on care partners, the non-medical costs attributable to PD were $40,290 per person in 2024, up 58% from the 2017 amount of $25,558. This amount is greater than similar costs of other conditions such as diabetes, which had reported an indirect cost per person with diabetes of $4,500 in 2022.

The U.S. Population of People with PD and Their Care Partners is on the Rise

In 2017, the study authors estimated that the number of people with PD in the U.S. was 1.04 million. The 2018 Parkinson’s Foundation Parkinson’s Prevalence Project estimated that 1.2 million in the U.S. would be living with PD in 2030. This new study estimates the number of people with PD in the U.S. in 2024 to be 1.1 million, with the country very likely to reach the 2030 estimate years earlier than anticipated.

The study also found that:

• Nearly 40% of people with PD receive unpaid care from a care partner, and people with PD have an average of 2.3 care partners. This suggests that the number of PD care partners in the U.S. is nearly equal to the number of people living with PD.

• 20% of the care partners reported taking early retirement or reduced work hours due to their care provision.

• 34% of the care partners reported missing or cancelling their own routine health care visits for similar reasons.

Why is this study important?

In 2019, researchers projected that the economic burden of PD would not reach $79 billion until 2037. However, the U.S. has already hit that mark. Current projections assume incidence holds steady — if it continues to rise, the total economic burden will rise faster than currently projected.

Understanding and reevaluating the annual economic toll on people with PD, their care partners and the government strengthen the case for increased federal investment in Parkinson’s research and care. The Parkinson’s Foundation policy and advocacy priorities reflect these economic burden findings, as the Foundation is currently  working to:

• Increase federal research funding, including $600 million a year in National Institutes of Health-funded Parkinson's research.

• Promote prevention strategies, including efforts to reduce exposure to environmental risks tied to Parkinson’s including chemicals like paraquat and trichloroethylene (TCE).

• Implement the National Parkinson’s Project — a coordinated federal initiative to improve prevention, diagnosis, treatment and care.

Take Action. Visit our Advocacy Center to support Parkinson’s policy priorities

Knowing the economic burden of Parkinson’s also allows us to better serve people with PD and their families with programs to help them live better with the disease, touching on areas they are most concerned about and where we can have the most impact.

This study was sponsored by The Michael J. Fox Foundation for Parkinson’s Research (MJFF), with support from the Parkinson’s Foundation, industry groups (ACADIA and AbbVie), CurePSP and the American Parkinson Disease Association.

The Michael J. Fox Foundation, with support from the Parkinson’s Foundation and other community organizations and industry partners, used data from public databases including Medicare, the Centers for Disease Control and Prevention and the Census Bureau. Several Parkinson’s organizations, including the Parkinson’s Foundation, assisted with data collection through sharing a survey across websites, social media networks and email communications.

Learn More

• Explore ways to get involved in the Parkinson’s Foundation — from becoming a research advocate to joining a research study.

• Prevalence and Incidence of Parkinson’s

• Policy & Advocacy Priorities