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.

• Access potential new treatments.

• Learn more about your own health.

Considerations:

• Participation may involve frequent visits or tests.

• Medications or daily routines may need to change.

• Experimental treatments may have risks or side effects.

• You may not benefit directly but your involvement can help future discoveries.

What types of research can people join?

Some studies happen in the lab (testing cells or animals). Others involve people directly. When research involves people, it’s called clinical research. There are two main types of clinical research:

• Observational Studies
  Researchers gather information without testing new treatments. This can include tracking health over time, collecting genetic data or studying lifestyle factors. The goal is to find clues about what causes Parkinson’s, how it progresses and what increases risk.

• Clinical Trials, also called interventional studies
  Researchers test interventions, which are treatments, devices, programs or other strategies aimed at improving a person’s health or condition. Some participants may receive a placebo — a “fake” version — while others get the intervention being tested. This helps show whether the new intervention really works.

How are new treatments approved?

The U.S. Food and Drug Administration (FDA) requires new treatments to go through three phases of clinical trials. After approval, some treatments enter a fourth phase. Each phase focuses on a key question about the treatment.

Phase 1: Is it safe?

Phase 2: Does it work?

Phase 3: How does it compare to what’s available?

FDA Approval

Phase 4: What are the long-term effects?

How do I choose a research study?

Joining a research study is always your choice. Before enrolling, talk with your doctor — often your neurologist — about whether a study is right for you and how it could affect your Parkinson’s care, including medications.

The study team can explain what participation involves, such as time commitments, visits, tests and possible risks and benefits.

Parkinson's Foundation Research

The Parkinson's Foundation supports groundbreaking research initiatives, including these priority programs:

• PD GENEration: Powered by the Parkinson’s Foundation
  A global study offering genetic testing and counseling at no cost for people with Parkinson’s. Participants can join in‑person or virtually. Learn more and enroll at Parkinson.org/PDGENEration.

• Parkinson's Foundation Surveys
  Your feedback helps us better understand the needs and experiences of people living with PD and their care partners. Sign up at Parkinson.org/Surveys.

• Research Advocates
  The Parkinson’s Foundation trains people with Parkinson’s and care partners to collaborate with researchers. This helps keep studies focused on what matters most to the community. Get involved at Parkinson.org/ResearchAdvocate.

Tips for Getting Involved in Research

• Start with trusted sources. Contact the Parkinson’s Foundation or local universities for research opportunities.

• Talk to your care team. They can help point you toward studies that fit your health.

• Check the details. Review the requirements and expectations before signing up.

• Know your options. There are many ways to support research, including joining trials, taking surveys or helping design studies.

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

¿Piensa participar en la investigación?

Ventajas:

• Avanzar en la prevención, los tratamientos y la cura
• Acceder a nuevos tratamientos potenciales
• Conocer más acerca de su propia salud

Consideraciones:

• Puede implicar visitas o pruebas frecuentes
• Puede requerir cambiar medicinas o rutinas
• Los tratamientos experimentales pueden tener riesgos o efectos secundarios
• Puede que no se beneficie directamente, pero su participación ayuda a futuros descubrimientos

¿En qué investigaciones puede participar la gente?

Algunos estudios se realizan en el laboratorio (con células o animales). Otros implican directamente a las personas. Cuando la investigación implica a personas, se denomina investigación clínica. Existen dos tipos principales de investigación clínica:

• Estudios observacionales
  Los investigadores recopilan información sin probar tratamientos.Pueden seguir la salud a lo largo del tiempo y estudiar factores como los genes o los hábitos de vida. El objetivo es encontrar pistas sobre qué causa la EP, cómo avanza y qué aumenta el riesgo.
• Ensayos clínicos, también llamados estudios de intervención
  Los investigadores prueban intervenciones, que son tratamientos, dispositivos, programas u otras estrategias destinadas a mejorar la salud o la afección de una persona. Algunos participantes pueden recibir un placebo —una versión "falsa"— mientras que otros reciben la intervención que se está probando. Esto ayuda a demostrar si la nueva intervención funciona realmente.

¿Cómo se aprueban los nuevos tratamientos?

La U.S. Food and Drug Administration (FDA, por sus siglas en inglés) exige que los nuevos tratamientos pasen por tres fases de ensayos clínicos. Tras la aprobación, algunos entran en una cuarta fase. Cada fase se centra en una pregunta clave sobre el tratamiento.

Fase 1: ¿Es seguro?
Fase 2: ¿Funciona?
Fase 3: ¿Cómo se compara con otras opciones?
Aprobación de la FDA
Fase 4: ¿Cuáles son los efectos a largo plazo?

¿Cómo elijo un estudio de investigación?

Participar en un estudio es siempre decisión suya. Antes de inscribirse, hable con su médico —a menudo su neurólogo— sobre si un estudio es adecuado para usted y cómo podría afectar su tratamiento del Parkinson, incluyendo los medicamentos.

El equipo del estudio puede explicar lo que implica participar, como los compromisos de tiempo, las visitas, las pruebas y los posibles riesgos y beneficios.

Investigación de la Parkinson's Foundation

La Parkinson’s Foundation apoya iniciativas de investigación pioneras, incluyendo estos programas prioritarios:

• PD GENEration: Impulsado por la Parkinson’s Foundation
  Un estudio global que ofrece pruebas genéticas y consejería genética sin costo para personas con Parkinson. Puede participar en persona o virtualmente. Aprenda más e inscríbase en Parkinson.org/PDGENE.
• Encuestas de la Parkinson's Foundation
  Sus comentarios nos ayudan a entender mejor las necesidades y experiencias de las personas que viven con la EP y sus aliados en el cuidado. Inscríbase en Parkinson.org/Encuestas (en inglés).
• Defensores de la investigación
  La Parkinson's Foundation capacita a las personas con la EP y a sus aliados para colaborar con los investigadores. Esto ayuda a mantener los estudios centrados en lo más importante para la comunidad. Visite Parkinson.org/DefensorInvestigacion (en inglés).

Consejos para participar en la investigación

• Comience con fuentes de confianza. Contacte a la Parkinson’s Foundation o a las universidades locales para encontrar oportunidades de investigación.
• Hable con su equipo de atención médica. Pueden dirigirlo hacia estudios que se adapten a su salud.
• Revise los detalles. Asegúrese de conocer los requisitos y expectativas antes de inscribirse.
• Conozca sus opciones. Puede participar en ensayos, responder encuestas, ayudar a diseñar estudios, entre otros.

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