Research is key to understanding the complex causes of Parkinson's disease (PD), developing treatments, improving care and finding a cure. Learn more about the research process and how to get involved.

Thinking about getting involved in research?

Benefits:

• Advance prevention, treatments and a cure.

• Get early access to treatments that may be helpful.

• Receive expert medical guidance.

• Help scientists learn how treatments affect people differently.

Considerations:

• Side effects, including unknown ones, may occur.

• Some studies have a placebo group, so not all participants receive the treatment.

• The treatment may not work as expected.

What is a clinical trial?

Clinical trials are research studies involving human participants. There are two main types: observational studies and interventional trials.

• Observational studies analyze real-life situations to uncover patterns and connections. These studies do not test treatments but instead ask questions about human behavior or take measurements. Examples:

  • Diagnostic trials look for disease biomarkers (measurable signs) to diagnose or track disease progression.

  • Genetic trials explore how genes affect disease and help people identify treatments or trials specific to their genetic makeup.

• Interventional trials test new treatments such as medications, surgeries, therapies or devices to ensure they are safe and effective. Examples:

  • Therapeutic trials test a treatment's safety and effectiveness.

  • Preventive trials explore ways to stop diseases from developing.

How are new treatments approved?

The U.S. Food and Drug Administration (FDA) requires new treatments to undergo three phases of clinical trials before approval. After approval, some treatments enter a fourth phase. Safety is checked at every stage. Phases include:

Phase 1: Test safety with small group

Phase 2: Check if it works for more people

Phase 3: Test on a larger scale

FDA Approval

Phase 4: Track long-term effects after approval

How can I get involved in research?

Your participation in research can help scientists and doctors discover new treatments, improve care and find a cure. Learn about the different ways you can contribute to Parkinson's research. Visit Parkinson.org/JoinAStudy.

The Parkinson's Foundation is committed to supporting groundbreaking research initiatives, including these priority programs:

• PD GENEration: Powered by the Parkinson’s Foundation 
  This global study offers genetic testing for PD-related genes and genetic counseling at no cost for people with Parkinson’s. Participate in-person or virtually from home. Learn more and enroll at Parkinson.org/PDGENEration.

• Parkinson’s Foundation Surveys
  Your feedback helps us better understand the needs and experiences of people with PD and their care partners. Sign up for our surveys to help us improve care. Visit Parkinson.org/Surveys.

Become a Research Advocate

The Parkinson’s Foundation connects people with PD and care partners to researchers to improve clinical trials and keep research focused on what matters most to the community.

Research advocates learn how the research process works, ways to engage with researchers and how to educate their communities. Training is available online or through an in-person workshop.

Learn more at Parkinson.org/ResearchAdvocate.

Tips for Finding the Right Study for You

• Talk to your doctor. Get help weighing the potential risks and benefits.

• Check eligibility. Certain studies have specific age, disease progression or genetic requirements.

• Consider time and travel commitments. While some studies may require regular visits, others can be done virtually.

• Discuss the study with your family. Understanding how participation might impact everyone will help you make an informed decision.

• Make sure the study is free to join. There should never be a fee or cost to participate in a clinical trial.

Parkinson’s disease (PD) involves the loss of brain cells that produce dopamine — a chemical that supports movement, mood and other functions.

While the cause of this cell loss isn’t fully understood, scientists believe that genetics, environment and lifestyle all play a role. Studying genetics is a key part of ongoing research to improve treatment and move us closer to a cure.

Quick Facts

• Around 12-15% of people with PD have a known genetic link.
• Genetic factors can increase the risk of developing Parkinson's.
• Participation in genetic studies helps scientists better understand the causes and progression of Parkinson's.

Genetic Testing:

• Empowers you, your healthcare team and your family to make informed health decisions
• Can help you determine if you can participate in clinical trials related to your genes
• May involve costs if outside of a study

Genetic Studies:

• Some offer genetic testing and counseling at no charge
• Results are used to advance research
• May lead to targeted therapies tailored to your genes

Understanding Genetics

Genetics is the study of how traits such as eye color and height are passed from parents to children. At the center of this process is our DNA, which acts as a cookbook with about 23,000 genes or "recipes" that make us who we are. Each gene gives instructions for making proteins that build and repair the body, support the immune system and perform many other important jobs.

Genes can have changes called variants. Most variants have no effect. Some determine unique features, such as brown eyes. Others affect how proteins work and can increase the chance of health problems. While genetics plays an important role, our health ultimately depends on a combination of genes, lifestyle and environment.

How Genetics Influence Parkinson’s

Changes in specific genes, such as LRRK2, GBA and SNCA, can increase the risk of developing Parkinson's or influence how symptoms progress in people already diagnosed.

Researchers are studying how these genetic changes vary among different groups to understand why Parkinson’s is more common in certain communities. Understanding these genetic differences can give us clues about why PD varies from person to person.

Genetic Testing

Genetic testing may help identify risks for Parkinson's or support more personalized care.

• Testing typically involves a blood or saliva sample to look for changes in DNA or proteins.
• Some tests can be done at home and mailed in, while others require a clinic visit.
• Costs and insurance coverage can vary.

Before testing, talk to your doctor about what it involves and what the results might mean for you and your family. A genetic counselor can help you understand the process and plan next steps.

Parkinson’s Foundation Genetic Study

PD GENEration: Powered by the Parkinson's Foundation is a global study offering genetic testing and counseling at no cost to people diagnosed with Parkinson's. Participants receive their results and may choose to be contacted if new information arises. Genetic data is stored securely without personal information and is used worldwide to improve understanding of PD risks and treatment.

You can enroll online and provide a blood sample either at home using a kit or by visiting a study site. By joining, you help advance research and gain insights into your own genetics. Learn more and enroll at Parkinson.org/PDGENEration.

Advancing Personalized Care

Studies are exploring treatments for people with changes in specific genes, such as LRRK2, GBA or SNCA. Targeting these genes may lead to more personalized therapies. Knowing your genetic profile can help determine if you qualify for these studies.

Tips for Navigating Genetic Testing & Research

• Contact our Helpline with questions about genetic testing or to learn more about our PD GENEration study.
• Know what to expect — most people do not test positive for a PD-related genetic change, but every result helps researchers better understand Parkinson's.
• Stay informed about ongoing genetic research. Studies such as PD GENEration continue to offer valuable insights into PD.

Parkinson’s disease (PD) affects approximately one million men and women in the United States, and more than 10 million people worldwide. Women have been shown to have a lower risk of developing PD, and research suggests that there are differences in the way that men and women experience Parkinson’s. Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day and receive lower-quality healthcare than men. This publication aims to highlight the historically unmet research and care needs of women with Parkinson’s disease, and elicit action in addressing these needs in future research and care.

Parkinson’s disease (PD) affects an estimated 10 million men and women worldwide. Women have been shown to have a lower risk of developing PD, and research suggests that there are differences in the way that men and women experience Parkinson’s. Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day (“fluctuations”) and receive lower quality healthcare than men.

What explains these differences? Based on the evidence so far, researchers can make some educated guesses. Some differences may have to do with biology—the way men’s and women’s bodies react to the disease or to therapies. Others may be due to lack of access to healthcare or to unintended differences in the way women are treated for PD compared to men.

Why the Lower Risk?

Studies conducted around the world, and across race, ethnic and age groups, support the finding that women overall have a lower risk of developing PD than men, but we still don’t know why. Environmental factors could explain this lower risk. It may be that women are less likely than men to be exposed to pesticides or heavy metals, or to sustain a head injury—all of which may increase a person’s PD risk.

Biological differences between women and men may also play a role. Estrogen, the female sex hormone, may protect the brain against PD, but little is known about its influence. If estrogen is preventative, it may only be helpful at certain levels or for a specific time.

What Are the Symptom Differences Between Men and Women?

Parkinson’s symptoms vary enormously from person to person. PD symptoms include motor symptoms, like tremor and stiffness, and nonmotor symptoms, like depression and fatigue.

Although women report experiencing some symptoms (including depression) more often than men, research to date has not conclusively shown whether symptoms affect women and men differently. This may be because symptoms vary as much among women as between women and men.

Are There Differences in Parkinson’s Treatment Between Men and Women?

All current treatment options (including medications, surgical options and exercise) address PD symptoms, but they do not slow down or stop the progression of PD. Levodopa, often prescribed as Sinemet, is considered the gold standard therapy for Parkinson’s movement symptoms. However, many people with PD experience changes in the effectiveness of the drug as the disease progresses. And some studies suggest that women are more likely than men to report these fluctuations earlier in the disease course and more frequently overall.

In particular, it seems that women are more likely to have involuntary movements called dyskinesias that occur when levodopa levels are highest in the blood. There are several factors that could be contributing to dyskinesia, including dosage, body weight and age of onset. Lower body weight can affect how medications build up in someone’s system. Lighter people sometimes need a smaller dose of medication to feel its effect. On average, women weigh less than men. If women and men are receiving similar doses, this may explain how levodopa levels are causing dyskinesias.

Physicians have also suggested that they find it harder to fine-tune Parkinson’s medications for women than for men. Women more often experience large swings in symptoms from even small changes in medications or schedules.

Deep brain stimulation (DBS) is an accepted surgical therapy for both men and women whose symptom fluctuations are difficult to control. Yet, even though women are reported to have greater improvement in quality of life after DBS, studies have shown that they are less likely than men to receive this therapy.

Are There Differences in Parkinson’s Care Between Men and Women?

Women with PD may face more barriers to quality healthcare and social support than men. Women are less likely than men to be cared for by a Parkinson’s specialist, such as a neurologist or movement disorder specialist, and are also less likely to have a care partner. On the other hand, women with Parkinson’s are more likely to do the following:

• Go to doctor’s appointments alone
• Use home healthcare
• Live in a skilled nursing facility

All these factors mean that women may not have access to adequate Parkinson’s care.

Conclusion

Research to date on women’s experience of PD underscores the need to focus more on this important part of the Parkinson’s community. Compared to men, women are diagnosed with PD less often, respond differently to current therapies, have less access to and lower use of expert care and are less socially supported. These combine so that women with PD have poorer quality of life than men. Studies that specifically address these issues are needed to improve the lives of all people affected by Parkinson’s.

Key Facts

• Women have a lower risk of developing Parkinson’s.
• There may be sex differences in PD symptoms, but the data are inconsistent.
• Small changes in medications or schedule can cause women to experience big changes in their symptoms, with dyskinesias being the most frequently reported side effect.
• Despite greater reported improvements to quality of life than men, women are less likely to receive deep brain stimulation (DBS).
• Women are less likely than men to be cared for by a PD specialist, neurologist or movement disorder specialist.
• Women with PD are accessing medical care for their Parkinson’s less than men.

As part of the Parkinson’s Foundation's Educational Book Series, Psychosis discusses just that: the causes, symptoms and treatments for hallucinations and delusions, as well as tips for caregivers of someone experiencing psychosis.

This book is only available digitally to view, download or print. It is also available in Kindle and audiobook formats.

Parkinson’s disease (PD) is often thought of in terms of its motor symptoms, such as slowness of movement, stiffness, and tremor. While l-dopa and dopaminergic drugs can help alleviate the motor symptoms of PD, patients are often also troubled by common non-motor symptoms such as fatigue, pain, sleep disturbances, constipation, urinary and sexual problems, and disturbed mood or cognition.

The good news is there are ways to address these problems, such as with other medications, visits to PD specialized therapists, exercise, dance, and other movement regimes. An awareness of non-motor symptoms and their connection to PD can help people with Parkinson’s find therapists, activities, and solutions that may alleviate the symptoms. In this podcast, Dr. Daniel Van Wamelen of King’s College in London discusses non-motor symptoms and ways to address them.

Released: October 8, 2019

La investigación es clave para comprender las complejas causas de la enfermedad de Parkinson (EP), desarrollar tratamientos, mejorar la atención y, finalmente, encontrar una cura. Aprenda más acerca del proceso de investigación y cómo participar.

¿Está considerando participar en la investigación?

Importancia de la investigación:

• Avanzar en la prevención, los tratamientos y la cura.
• Obtener acceso temprano a tratamientos potencialmente útiles.
• Beneficiarse de la evaluación de expertos médicos.
• Ayudar a comprender las respuestas individuales a los tratamientos.
• Contribuir a la investigación, incluso si no tiene Parkinson.

Consideraciones:

• Pueden producirse efectos secundarios, incluso desconocidos.
• Algunos estudios incluyen un placebo para comparar y probar el tratamiento.
• El tratamiento puede resultar ineficaz.

¿Qué es un ensayo clínico?

Los ensayos clínicos son investigaciones en las que participan personas. Existen dos tipos principales:

Los estudios observacionales analizan situaciones de la vida real para descubrir patrones y conexiones. En lugar de centrarse en los tratamientos, plantean preguntas sobre el comportamiento humano o realizan mediciones. Algunos ejemplos son:

• Ensayos de diagnóstico para buscar biomarcadores de enfermedad (signos medibles) para diagnosticar o seguir su progresión.
• Ensayos genéticos para explorar el papel de los genes en las enfermedades y ayudar a las personas a identificar tratamientos o ensayos específicos según su composición genética.

Los ensayos de intervención prueban nuevos tratamientos, como medicamentos, cirugías, terapias o dispositivos, para garantizar su seguridad y eficacia. Algunos ejemplos son:

• Ensayos terapéuticos para comprobar la seguridad y eficacia de un tratamiento farmacológico o no farmacológico.
• Ensayos preventivos para explorar métodos, como el ejercicio, para prevenir enfermedades.

¿Cómo se aprueban los nuevos tratamientos?

Los tratamientos deben pasar por cuatro fases de ensayos clínicos antes de que la Administración de Alimentos y Medicamentos de los EEUU (FDA) considere su aprobación. Las fases incluyen:
Fase 1: Verificar la seguridad y la dosis adecuada
Fase 2:  Confirmar eficacia en un grupo reducido
Fase 3: Pruebas a mayor escala
Fase 4: Seguimiento tras la aprobación

¿Cómo puedo participar en la investigación?

Su participación en la investigación puede ayudar a científicos y médicos a descubrir nuevos tratamientos, mejorar la atención y encontrar una cura. Explore las distintas oportunidades de participar en la investigación sobre la EP en Parkinson.org/Estudios (página en inglés).

La Parkinson’s Foundation está comprometida a apoyar iniciativas de investigación pioneras, incluyendo estos programas prioritarios:

• PD GENEration: Impulsado por la Parkinson’s Foundation
  Este estudio mundial ofrece pruebas genéticas para genes relacionados con el Parkinson y asesoramiento genético sin costo para personas con la EP. Participe en persona o virtualmente desde casa. Aprenda más e inscríbase en Parkinson.org/PDGENE.
• Encuestas de la Parkinson's Foundation
  Esta iniciativa busca mejorar el cuidado de la EP al entender mejor las experiencias de las personas que viven con la enfermedad y de sus aliados en el cuidado (cuidadores). Además, se comparten los resultados con la comunidad. Hágase escuchar e inscríbase en Parkinson.org/Encuestas (página en inglés).

Conviértase en defensor de la investigación

La Parkinson’s Foundation empareja a personas con la EP y a aliados en el cuidado (cuidadores) con investigadores para garantizar ensayos clínicos más eficientes y eficaces. Para saber más sobre cómo convertirse en defensor de la investigación, visite Parkinson.org/DefensorInvestigacion (página en inglés).

Consejos para encontrar el estudio adecuado

• Hable con su médico sobre los posibles riesgos y beneficios.
• Compruebe si cumple con los criterios: Algunos estudios tienen requisitos específicos de edad, progresión de la enfermedad o genética.
• Tenga en cuenta el tiempo y el viaje necesarios.
• Comente el estudio con su familia para entender cómo podría afectar su participación a todos.

People who treat Parkinson’s disease (PD) and many people with PD know that there is not one typical form of the disease. One thing that may affect its symptoms and course is a person’s genetic make-up. The different genes that are risk factors for PD and the variations between them and even within the same gene may determine how the disease presents, progresses, and responds to treatments. With the aim of uncovering genes and mechanisms responsible for PD, the Parkinson’s Foundation initiated PD GENEration: Mapping the Future of Parkinson’s Disease, a study to look at the genes of 15,000 people with PD and correlate those findings with disease symptoms, progression, and response to treatments.

At the same time, participants in PD GENE will quickly get feedback on their genetic status that may allow them to enter clinical trials specific for the risk factors that they carry. The results will be much more comprehensive than what commercial genetic tests can provide, and it will all be free to the participants, including genetic counseling. In this podcast, neurologist and lead investigator, Dr. Roy Alcalay of Columbia University, a Parkinson’s Foundation Center of Excellence, and patient advocate Anne Hall give some background on the PD GENE genetics initiative.

Released: September 24, 2019

Parkinson’s disease (PD) may turn out to be not one disease but a group of similar conditions with different genetic risk factors, varying symptoms, and courses. Different genes may have variations between them or even variations within the same gene, with implications for symptoms, progression, and treatments. To help uncover key mechanisms responsible for PD and its progression, the Parkinson’s Foundation has launched PD GENEration: Mapping the Future of Parkinson’s Disease to study the genetic makeup of 15,000 people with the disease. The two main genes targeted in the study are carried by a minority of people with PD, but they may offer insights into mechanisms of the disease that operate in the larger population. In this podcast, Parkinson’s Foundation Chief Scientific Officer Dr. Jim Beck describes the goals of this Parkinson’s study, how genes affect the course of the disease, and ultimately, how the results of the study may empower people to take better control of their disease.

Released: August 13, 2019

Researchers and clinicians are learning that Parkinson’s disease (PD) is an umbrella term that covers similar but distinct variants of the disease that may result from differences in biology. Symptoms may be similar, but each person’s disease may have different features, rate of progression, needs, and treatments connected to the specific underlying cause. In this era of “personalized” medicine, a goal is to treat each person’s condition according to their unique disease. To do so, neurologists will need to be able to define and identify those differences (“biomarkers”) that will allow a truly personalized approach to treatment. A biomarker is a measurable indicator of a normal or abnormal bodily function. Examples are imaging such as MRI, chemicals in the blood or brain, brain wave patterns, sleep cycles, or even specific signs and symptoms.

Having biomarkers indicative of specific variants of the disease could help to design clinical trials to test therapies. It would allow researchers to include individuals with similar underlying biology when they test a potential new drug to be able to understand if it works for that form of PD. In a trial that included people falling under the umbrella term of “PD,” for example, researchers could see who benefited from the drug and then examine them to see what biomarkers they had in common. In this podcast, Dr. Anthony Lang, Director of the Edmond J. Safra Program in Parkinson’s Disease at the Toronto Western Hospital in Canada, discusses the need for biomarkers when searching for disease-modifying therapies – those treatments that can actually modify the course of PD and not just treat its symptoms. And he tells us why it is sometimes hard to tell the two apart.

Released: July 30, 2019