Every year, thousands of neurologists, researchers and other Parkinson’s disease (PD) experts gather at the International Congress of Parkinson’s Disease and Movement Disorders to share new ideas and breakthroughs aimed at transforming life for people with Parkinson’s. This year the conference took place October 5 in Honolulu, HI.  

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1. Returning Secondary Health Findings in the PD GENEration Study 

PD GENEration: Powered by the Parkinson’s Foundation is a global research study providing genetic testing and counseling at no cost to people with Parkinson’s. Since 2019, the study has expanded to nearly 70 sites in the U.S. and internationally, enrolling more than 27,000 participants. PD GENEration also recently expanded its testing platform to provide secondary health findings to participants.  

Using whole genome sequencing that looks at a person’s entire DNA, PD GENEration can now disclose 21 genes linked to either PD or parkinsonism and 10 non-PD related genes. 

Key Takeaways 

• As of February 2025, 96% of study participants with whole genome sequencing consented to receive secondary health findings. 

• Gene-specific counseling materials were created to share this additional genetic health information with participants. A system was also established to review genes of secondary health findings as new research emerges. 

• Future studies will help researchers better understand how people feel after receiving these results. 

Learn more & enroll in PD GENEration. 

2. Engagement of PD GENEration Participants: Insights into Genetic Counseling Recall and Clinical Trial Interest 

Previously, data for PD GENEration was only collected from participants at enrollment — this limited long-term insights. The Parkinson’s Foundation followed up with participants to better understand their PD GENEration experience and whether their views on joining the clinical research trial changed over time. 

Key Takeaways 

• While most respondents remembered their PD GENEration experience and many were interested in learning more about future clinical trials, nearly 30% either did not recall receiving genetic counseling or receiving their genetic test report. 

• People who had a negative test result or a longer enrollment period were slightly more likely to misremember their PD GENEration experience. Men were also slightly more likely to misremember than women. 

• The results emphasize the importance of developing methods for ongoing engagement and information sharing. 

Discover how to join a research study. 

3. Distribution of Genomic Ancestries and Genetic Variation Among Individuals Enrolled in the PD GENEration Study 

Analyzing genetic ancestry is important in large Parkinson’s genetic studies to accurately measure PD risk in different populations. This study looked at the genetic backgrounds of people in the PD GENEration study and how often certain genetic results were found.  

As of August 2025, next-generation genetic sequencing — which allows for comprehensive analysis of genetic variations — was completed for 22,189 people with Parkinson’s. Of those tested, about 12% were found to have a genetic change linked to the disease. Most of those tested have European genetic ancestry, and more than 9% are of Ashkenazi Jewish genetic ancestry.  

Key Takeaways 

• There were differences between what participants reported as their race, ethnicity and ancestry and what the genetic test results showed. 

• The study also showed that the likelihood of having specific Parkinson’s-related genes varies depending on a person’s genetic ancestry.   

• The high number of people with European ancestry in PD GENEration is driving efforts to recruit participants from diverse ancestries to better understand how genes affect disease risk. 

Explore current findings from PD GENEration. 

4. The Role of Research and Genetics Educational Events in Parkinson’s Research: Overcoming Barriers in the Hispanic/Latino Community 

Diversity in Parkinson’s research is key to understanding the disease and discovering new treatments. Hispanic and Latino members of the Parkinson’s community remain underrepresented in genetics research due to barriers such as language differences, lack of information and unequal access to healthcare.  

A 2024 strategic collaboration between the Parkinson’s Foundation and the Latin American Research Consortium on the Genetics of Parkinson’s Disease (LARGE-PD) expanded PD GENEration genetic testing and counseling across Latin America to increase Hispanic and Latino participation in genetic research. 

Educational outreach events in Mexico City, Mexico and Cali, Colombia staffed by local doctor and nurse volunteers combined on-site participant recruitment with information on research, genetics and broader community topics. These events included tailored Spanish-language materials. 

Key Takeaways 

• Sustained, community-driven efforts are key to addressing participation gaps among medically underrepresented communities.  

• Research and genetics educational events, along with culturally adapted recruitment strategies, can reduce barriers, raise awareness and boost Hispanic and Latino participation in Parkinson’s genetic research. 

• The share of Hispanic and Latino PD GENEration participants rose sharply in September 2024, reaching a peak of more than 35%, reflecting recruitment efforts.  

Learn more about our commitment to making research more inclusive. 

5. Online Learning Preferences of Healthcare Providers Caring for People with Parkinson’s  

Many health professionals are required to continue their education to stay current with evolving knowledge and research. This learning can often be done online. However, information on how healthcare professionals caring for people with Parkinson’s prefer to learn online is limited. This study aimed to identify continuing education learning preferences and barriers to course participation and completion across nearly 5,000 healthcare professionals caring for people with PD.  

Key Takeaways 

• Participants preferred live and recorded webinars as well as interactive and hands-on learning experiences that are directly relevant to their healthcare roles.  

• This study showed time and financial constraints can be barriers to continuing education. Course workload and media playback speed can also be factors that can affect completion rates.  

• The Parkinson’s Foundation will use these results to inform the development of future online continuing education for healthcare professionals. 

Explore our Learning Lab courses, designed for healthcare professionals.   

6. Parkinson’s Exercise Guidelines: From Outdated to Updated 

Exercise and movement can improve many Parkinson's symptoms. The Parkinson’s Foundation, in collaboration with the American College of Sports Medicine, created Parkinson’s exercise recommendations in 2021 to help people with PD receive safe and effective exercise. Clinical guidelines are typically reviewed and updated every three to five years to ensure they reflect the latest, high-quality, evidence-based care. The Parkinson’s Foundation conducted research to identify any gaps in literature and used its findings to revise professional-facing exercise recommendation guidelines. A panel of international subject matter experts and people with Parkinson’s reviewed the revisions. Their feedback, along with information collected during a public comment period, was used to further improve the guidelines. 

Key Takeaways 

• The panel agreed recommendations should highlight the importance of exercise safety, a referral to a physical therapist and exercise modifications based on the ability of the person with Parkinson’s, their medication status and their stage of PD. 

• The guidelines were updated to reflect input from the panel, the public and the latest evidence and best practices. 

• The Parkinson’s Foundation turned the guidelines into a practical, user-friendly guide for exercise professionals who work with people with Parkinson’s. 

Read and download our Parkinson's Exercise Recommendations fact sheet. 

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Find more about the Foundation’s commitment to research at Parkinson.org/Research. 

Parkinson’s disease (PD) can be difficult to diagnose by clinicians, especially in early stages of the disease. This means that some people with PD may get diagnoses only late in the disease when the symptoms are more obvious. Others may never get a formal diagnosis at all. 

Jacob Simmering, PhD, recipient of a Parkinson’s Foundation Stanley Fahn Junior Faculty Award, is digging through healthcare data to find clues that could lead to earlier and more accurate diagnoses of PD. Using statistical analysis, he hopes to identify diagnostic patterns that commonly precede PD and that could be used as future medical signposts, guiding doctors toward earlier detection of the disease. 

“This award is crucial to my career development as a researcher in Parkinson’s disease,” said Dr. Simmering. “Parkinson’s disease is a common neurodegenerative disease without any disease-modifying, neuroprotective therapies. One issue with degenerative diseases is that the damage is irreversible. By the time clinical symptoms become apparent, the disease is often very advanced in terms of neuronal death. Earlier intervention may allow for treatments that preserve neurons — slowing, if not preventing, progression.” 

From his lab at the University of Iowa, a Parkinson’s Foundation Center of Excellence, Dr. Simmering is utilizing health insurance databases to collect healthcare data on nearly 250,000 deidentified people recently diagnosed with PD. From this information, he hopes to identify a “diagnostic window” for PD—a stretch of time with repeated doctor’s visits for PD-like symptoms signaling the presence of the disease. 

Dr. Simmering will then use this diagnostic window as a frame, looking at people with recent diagnoses and figuring out what prevented physicians from diagnosing PD sooner. His hypothesis is that the three biggest factors that play into delayed diagnoses are: 

• Unique symptom patterns of PD 

• Living in more rural areas 

• Not being seen by a neurologist 

Sorting through this data will provide evidence for other repeated symptoms that could clue doctors into a PD diagnosis earlier. While tremor and involuntary movements are most commonly used to lead to a PD diagnosis, other symptoms like urinary problems and anxiety could be just as valuable. Altogether, Dr. Simmering will use this detailed analysis to generate a forward-looking “risk score” to identify people who are most at risk of developing PD.  

“These results will allow us to screen for people who have symptoms and characteristics similar to people who will go on to be diagnosed with Parkinson's disease, potentially allowing for earlier detection of disease,” said Dr. Simmering.  

Earlier detection means providing symptom relief sooner to those with the disease, improving their quality of life with early treatment. 

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

Mi nombre es Adriana Jiménez. Mi papá fue diagnosticado hace más de 10 años con la enfermedad de Parkinson y en ese momento empezó nuestra aventura con esta condición, ya que yo no sabía lo que significaba.  

Mis papás están en la ciudad de Guadalajara y yo vivo en los Ángeles, Ca., y estar a distancia fue un reto bastante grande. Gracias a Dios, tuve la oportunidad de ir a verlos y ver que no había nada de información del Parkinson en Guadalajara. Cuando regresé a California, empecé a buscar información de lo que es esta enfermedad.  

Al principio, no encontraba nada en español y logré contactarme con la Parkinson’s Foundation que, dándose cuenta de la gran necesidad de información en español que se requiere, ha tomado el liderazgo en crear documentos informativos.  

En el 2018, pude asistir a la primera conferencia en español de la Parkinson’s Foundation en Long Beach, Ca., donde pude entender qué es esta condición, cuáles son las diferentes terapias y cómo hablar con mis papás y familiares para que pudieran entenderlo. ¡Ser un cuidador a distancia no es fácil! Sin embargo, tampoco la distancia es un impedimento para poder estar cerca de nuestra familia y apoyarla. ¡Buscar la información e instruirnos marca una gran diferencia!  

Mi mamá fue diagnosticada también con Parkinson hace 4 años y la forma en que entendimos y la ayudamos fue diferente que a mi papá. Ya tenía más información. Pude explicarle lo importante de saber que cada persona con Parkinson es diferente y que, a pesar de estar lejos, siempre estoy con ellos, llevándoles nuevas clases en línea que encuentro en la Parkinson’s Foundation, contactando a mi mamá con doctores, creando grupos de apoyo, uniéndome con otras personas que están en la misma situación que la mía, con quienes compartimos las mismas preguntas e inquietudes.  

Soy fiel creyente en que la unión hace la fuerza y ahí decidí crear el programa de Parkinson con Give for a Smile, donde encontré también doctores y especialistas hispanos, como yo, aquí en los Estados Unidos, que tienen un gran amor a nuestras familias latinas, a nuestras familias con Parkinson; porque siempre digo: no es una persona con Parkinson; ¡es una familia con Parkinson!  

Con esta enfermedad, toda la dinámica cambia; pero si lo entendemos, lo procesamos y nos unimos, podemos marcar la diferencia en nosotros, en nuestra familia y en nuestra comunidad.  

Si me preguntara, ¿qué me hace feliz en esta aventura del Parkinson? Puedo decir tranquilamente que saber que, aun a la distancia, puedo estar cerca de mis papás, ayudándolos con información, clases por Zoom, conferencias y a saber que tener Parkinson no es el final del camino; es el principio de una nueva aventura; que mi familia ha crecido, porque la familia del Parkinson me abraza y me apoya siempre. ¡Lo único que tengo que hacer es unirme a ella! 

Levodopa, which helps with the movement symptoms of Parkinson’s, tends to work less well over time, especially for women. 

Parkinson's disease (PD) is a condition that gets worse over time, impacting the nervous system. It's caused by the gradual death of brain cells that produce dopamine, a crucial chemical messenger for controlling movement. When these cells are lost and dopamine levels drop, people with Parkinson's begin to experience noticeable symptoms like shaking or tremors, muscle stiffness, a general slowness of movement and problems with balance. 

A primary treatment for these movement symptoms is the drug levodopa. The body converts this medication into dopamine, helping to replenish the brain's supply. By doing so, levodopa can significantly reduce the physical challenges of the disease and improve a person's daily life. 

However, for many individuals with Parkinson's, the effectiveness of levodopa can begin to diminish between doses. In other words, it starts "wearing off." Patients may notice their movement symptoms, such as tremors and stiffness, gradually returning before their next scheduled dose. 

Parkinson’s also impacts men and women differently. Men are estimated to be 1.5 times more likely to develop Parkinson’s. Women with Parkinson's are often diagnosed at a later age and may have slightly different symptoms. These differences between men and women with Parkinson’s could be due to a variety of factors, including hormonal differences and genetics. 

To better understand how these gender differences impact experience with levodopa, a recent study tracked 216 individuals with Parkinson's over a two-year period. The goal was to investigate whether men and women experience levodopa wearing off at different rates and to examine the symptoms that occur while on this medication. 

Study Results 

Participants included 139 men and 77 women with Parkinson’s who began taking levodopa for the first time at the start of the study. After two years in the study, almost 65% of women experienced symptom fluctuations, or times when the medication's effects seem to "wear off" before the next dose is due. This was compared to about 53% of men. This suggests that for many women, the medication was less effective in managing symptoms and did not feel as consistent over time. 

In addition, more women in the study developed dyskinesia, a side effect of levodopa that leads to involuntary, uncontrolled movements. About 14% of women developed dyskinesia compared to only 5% of men. Taken together, these results suggest that there may be differences in how levodopa is processed in the body between men and women. 

The study concluded that being female was the strongest predictor for both the wearing-off effect and dyskinesia after taking levodopa for two years. This indicates that gender is an important factor when considering how a person might respond to this medication. 

Highlights 

• The study followed 139 men and 77 women with Parkinson’s for two years after they started taking levodopa for the first time.  

• During the two-year study period, 65% of women experienced times when the medication's effects seemed to "wear off" before the next dose. This was compared to about 53% of men. 

• During the study, about 14% of women developed dyskinesia, compared to only 5% of men.  

• The study concluded that female gender predicted the development of motor fluctuations and dyskinesia more than any other factor.  

What does this mean? 

Women’s experiences have been historically underrepresented in PD research. This study adds to increasing evidence that men and women often experience various aspects of PD differently, including in their response to the PD medication levodopa. Specifically, these results indicate that women may be more likely to have worse responses to levodopa treatment over time compared to men. However, the reasons for these differences between men and women are still unknown. Additionally, it is common for both men and women to have breakthrough symptoms on levodopa over time.  

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

Knowing that men and women may react differently to prolonged levodopa treatment can help healthcare providers develop more effective treatment plans for patients. While more research needs to be done, the findings from this study suggest that more tailored, “gender-oriented” treatment recommendations may be needed. If you are struggling with symptoms related to levodopa treatment, talk to your doctor to discuss your treatment plan.  

Learn More 

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

• Levodopa 
• PD and Medication: Advancing Treatment 
• Episode 6: New Levodopa Delivery Methods for Parkinson’s