Parkinson’s Foundation Shares 14 Scientific Posters at Seventh World Parkinson Congress

The World Parkinson Congress is an international conference that brings the Parkinson’s disease (PD) community together — from people living with PD and care partners, to healthcare professionals, researchers and organizations working to make life better for people with Parkinson’s. This year, thousands will attend the event dedicated to Parkinson’s research and care in Phoenix, AZ, from May 24 to 27.

Below are the 14 scientific posters the Parkinson’s Foundation is sharing at the seventh World Parkinson Congress:

RESEARCH FINDINGS

These posters focus on how we are making PD research more inclusive and why it is essential to involve people with Parkinson’s in the research process.

SEE ALL RESEARCH POSTERS

1. PD GENEration Sub-Studies: The Next Step to Engaging People with Parkinson’s in Research

PD GENEration: Powered by the Parkinson’s Foundation is an international research initiative offering at no cost genetic testing and counseling for people living with Parkinson’s. The Parkinson’s Foundation has launched four new sub-studies as an extension to PD GENEration. 

These include:

1. PD GENEration Surveys: polls all PD GENEration participants on topics of interest in the PD community, such as environmental exposures and changes in diagnosis or medications.

2. PD GENEration Family: offers genetic testing and counseling at no cost to parents, siblings or children (all over the age of 40) of eligible PD GENEration participants.

3. PD GENEration Insights: collects expanded clinical data for eligible PD GENEration participants through self-report questionnaires and virtual clinician visits.

4. PD GENEration Explore: collects plasma and administers smell identification tests to PD GENEration participants.

Main takeaways:

• The four new PD GENEration sub-studies offer, for the first time, additional research opportunities to participants, further expanding engagement in research.

• This expanded data collected contributes to the research community and helps researchers further their work to find a cure for PD. 

2. PD Trial Navigator: Personalized Guidance on Clinical Trial Enrollment for People Living with PD 

The Parkinson’s Foundation PD Trial Navigator is a new program designed to help people with Parkinson’s better understand and access clinical trials. It aims to accelerate enrollment in genetic and disease-modifying clinical trials, build a trial-ready community and empower people with Parkinson’s to make informed decisions about participating in research. The program builds on PD GENEration, using surveys and focus groups to understand barriers to research participation. It provides personalized support through one-on-one guidance, educational materials and direct connections to trial opportunities. 

Main takeaways:

• Many people with Parkinson’s are interested in clinical trials but face barriers such as limited awareness, travel challenges and complex eligibility requirements.

• Personalized guidance and education can significantly improve understanding and engagement in clinical research.

• The Parkinson’s Foundation PD Trial Navigator program can help bridge the gap between genetic testing and participation in precision medicine trials.

3. Assessing Provider Performance in Simulated Genetic Counseling Sessions Within the PD GENEration — LARGE-PD study

This poster analyzed PD GENEration-related genetic counseling training delivered by Indiana University genetic counselors to clinicians in the Latin American Research Consortium on the GEnetics of Parkinson’s Disease (LARGE-PD).It reviewed strengths and weaknesses identified during mock genetic counseling sessions by analyzing 46 video feedback forms from two training cycles.

Main takeaways:

• All clinicians who completed video feedback after their first video successfully met competency expectations. 

• These results suggest that structured, iterative training programs can be an effective approach for standardizing and strengthening genetic counseling skills, which are essential for providers returning genetic results to people with Parkinson’s disease.

4. Building Genetic Counseling Capacity in Latin America to Facilitate the Sharing of Genetic Results with PD GENEration Participants — LARGE-PD study

This poster summarized the development and implementation of a genetic counseling training program for clinicians in Latin America participating in the LARGE-PD study. The program prepared clinicians to return genetic test results to people with Parkinson’s through counseling sessions. It evaluates the effectiveness of this training using feedback from mock counseling sessions and certification outcomes.

Main takeaways:

• 46 video feedback forms across two training cycles showed that clinicians improved after structured feedback and successfully met competency expectations.

• 32 clinicians across 12 countries were trained and certified, ensuring access to genetic counseling at every LARGE-PD site.

• Structured, iterative training programs can effectively build local expertise, improving access to genetic information for people with Parkinson’s in Latin America.

  

CARE FINDINGS

These studies focus on how to improve care for people with Parkinson’s. 

SEE ALL CARE POSTERS

5. The National Roundtable on Parkinson’s Care and Innovation: A Multidisciplinary, Multi-Sector Convening Aimed at Addressing the Most Pressing Challenges in Parkinson’s Care

The U.S. faces a growing Parkinson’s care crisis as PD prevalence rises and shortages of trained health professionals limit access to quality care. The National Parkinson’s Project, the first federal legislation dedicated to ending PD, directs the Department of Health and Human Services to advance prevention, diagnosis, treatment and cures for Parkinson’s and related disorders. As a national leader in Parkinson’s care and to help guide PD care priorities, we held a National Roundtable on Parkinson’s Care and Innovation on September 4, 2025.

Main takeaways:

• The Roundtable brought together experts across disciplines and industries, including people with PD and care partners. 

• Discussion led to a multiyear roadmap to transform PD care through policy reform and action: Parkinson's Care and Innovation: A Patient-Centered Agenda for Change.

• The agenda outlines four priority solutions to guide the National Parkinson’s Project: building community clinician capability, developing a sustainable and integrated care model, defining a minimum clinical dataset, and prioritizing patient-centered technologies.

Learn more about our Policy Priorities

6. Prioritizing the Improvement of Hospital Care for People with Parkinson’s Disease through the Parkinson’s Foundation Hospital Care Initiative

This poster details how the Parkinson’s Foundation is leading the national effort to improve hospital care for people with Parkinson’s through systemic changes in policy, technology, culture and education. Our Hospital Care Initiative aims to eliminate preventable harm and promote higher reliability in care for people with PD in the hospital.

Main takeaways: 

• The Parkinson’s Foundation is actively working with more than 50 Health Systems to improve care for people with Parkinson’s in their hospitals. 

• We are raising awareness and building partnerships to continue to expand our reach. 

• We are funding and leading research projects to show how negative hospital outcomes can be addressed through specific solutions designed to improve hospital care for people with PD.  

7. Optimizing PD Care: Empowering People with Parkinson’s Before, During and Between Appointments 

Healthcare appointments are critical opportunities for people with Parkinson’s and their healthcare teams to improve quality of life. However, PD appointments can feel overwhelming. People with PD and clinicians report challenges with making the most of their time together. The Optimizing Parkinson’s Care Initiative aims to provide education, training and resources to empower people with PD to become more active partners in their PD care.  

Main takeaways:

• We collaborated with people with PD, care partners, clinicians and health literacy experts to create resources focused on making the most of PD care, through actionable steps taken before, during and between appointments.  

• There is an emphasis on self-reflection, self-education, self-advocacy and understanding that speaking up about lived experience is a trusted and essential part of the appointment.  

• The Optimizing Care webpage and Steps to Prepare for a Parkinson’s Appointment worksheet guide people with PD to select their top three priorities based on what’s most impacting their daily life, what’s most time sensitive, and what matters to most to them.  

8. Community Partners in Parkinson’s Care: A Survey of Current Site Champions of the Program

Community Partners in Parkinson’s Care educates and prepares staff in senior living communities and home care agencies to provide better care for people with Parkinson’s across the U.S. Currently the program serves 97 partners within 27 states. This program has trained more than 30,000 direct care providers. This poster shares outcomes of a recent survey of site champions. Site Champions ensure ongoing required staff training, collect program outcomes on a semi-annual basis and maintain communication and collaboration with Community Partners program staff.

Main takeaways:

• Surveys showed improvements in Parkinson’s care, including better medication accuracy and timeliness, more comprehensive care plans, increased exercise integration and greater staff awareness of effective communication and individualized care needs.

• Limited staffing and time for training were identified as the biggest challenges in ongoing success of the program.

• Survey results will be used for future program modifications and updates.

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

This poster explores how healthcare providers prefer to learn through online continuing education (CE) when caring for people with Parkinson’s. A survey of nearly 5,000 professionals found that most prefer live or recorded webinars lasting one to two hours, especially when content is directly relevant to clinical practice. These findings will help guide the development of more accessible, engaging, and effective educational programs. 

Main takeaways:

• Healthcare providers prefer clinically relevant, interactive and flexible online learning formats — especially live webinars.

• Many providers face barriers such as limited time and financial constraints, and some struggle to complete courses due to workload or technical issues.

  

EDUCATION FINDINGS

These studies focus on trends in the Parkinson’s community and aim to provide information that can empower people in the PD community.

SEE ALL EDUCATION POSTERS

10. Processing a Challenging Hospital Experience: Providing a Tool for People with Parkinson’s to Document a Difficult Stay and Determine Next Steps

After a difficult hospital experience, many people are unsure of next steps. This poster details how the Parkinson’s Foundation, in collaboration with members of the PD community, developed a guide to help people with Parkinson’s and their families document and process their hospital experience. The form includes robust, PD-relevant questions about their hospital stay and provides suggestions for support and preventing future harm.

Main takeaways: 

• The Parkinson’s Foundation offers a questionnaire as a digital form on our website. 

• People with PD and care partners can submit their answers anonymously, share their experiences to help raise awareness, and/or request outreach and resources from the Foundation.  

• Forms can be downloaded, printed and saved for future appointments or hospital stay. 

• Use the form now

11. Empowering Hispanic/Latino Communities Through Research and Education: Expanding Access to Parkinson’s Genetic Studies Across Latin America

Hispanic/Latino communities have historically been underrepresented in Parkinson’s genetic research, limiting diversity and equity in scientific discovery. To address this gap, the Parkinson’s Foundation expanded its PD GENEration initiative in collaboration with LARGE-PD, bringing education, genetic counseling and research opportunities directly to communities across Latin America. Our objective was to increase access to PD genetic research among Hispanic/Latino populations by implementing culturally tailored education and recruitment events across Latin America. 

Main takeaways:

• Between 2024 and 2025, events in Mexico, Colombia, El Salvador, and the Dominican Republic reached 700 people and enrolled 240 new participants, increasing representation in PD GENEration. 
• These events integrated genetics education, counseling, and on-site enrollment, led by local clinicians and institutions to build trust and reduce barriers to participation. 
• The initiative strengthened long-term collaborations with local hospitals and clinicians, creating a sustainable and replicable model for community engagement. 
• Ultimately, this work demonstrates that combining culturally relevant education with direct access to research participation can reduce barriers, increase trust, and improve representation in PD genetic research. Expanding these community-driven efforts is essential to advancing more inclusive and equitable Parkinson’s research.

12. Joining Forces: A Collaborative Partnership between the Veterans Health Administration and the Parkinson’s Foundation

There are more than 110,000 veterans living with Parkinson’s in the U.S. Since 2020, the Parkinson’s Foundation and the Department of Veterans Affairs (VA) have partnered to improve the health, well-being and quality of life of veterans living with PD. Together, we create and provide veterans with PD and their loved ones resources. The partnership continues to enhance access to VA care and support veterans living with PD. Explore veterans’ resources.

Main takeaways:

• The Parkinson’s Foundation and VA have:

  • Engaged more than 20,000 veterans with PD and loved ones 

  • Hosted more than 20 webinars for veterans with more than 16,000 registrations 

  • Launched six co-created resources including Parkinson.org/Veterans webpages and Veterans Guide

  • Trained more than 150 VA professionals through the Parkinson’s Foundation Team Training program

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

This project updated exercise guidelines for people with Parkinson’s to reflect the latest research and expert input. A team of specialists reviewed current evidence, identified gaps and revised recommendations to improve clarity, safety, and usability. The updated guidelines were reviewed by international experts and people with Parkinson’s, followed by a public comment period.

Main takeaway:

• Key updates to exercise guidelines emphasize safe exercise practices, referral to physical therapy and tailoring programs based on disease stage and individual needs.

14. HOPE PALS: The power of collaboration at the service of the Spanish-speaking PD community

HOPE PALS (Hispanic Organizational Partners Engaged in Parkinson’s Awareness and Leadership Solutions) is a cross-organizational coalition launched by the Davis Phinney Foundation to strengthen collaboration among Parkinson’s organizations. Coalition partners include the American Parkinson’s Disease Association, LARGE-PD, The Michael J. Fox Foundation, the Parkinson’s and more. Its goal is to improve the experience of Spanish-speaking people and families affected by Parkinson’s by maximizing shared resources, increasing awareness and advancing knowledge exchange across organizations.

Main takeaways:

• Through monthly meetings, organizations have expanded cross-promotion of resources and inspired new collaborative projects.

• Twice a year, the Davis Phinney Foundation Espacio Parkinson webinar invites coalition members to share materials and events, strengthening visibility and access for the Spanish-speaking PD community.

• HOPE PALS demonstrates the power of cross-organizational collaboration to amplify education and support for underserved PD communities. By leveraging digital connections and shared leadership, this coalition has elevated collective impact, enhanced community trust and expanded culturally relevant resources for the international Spanish-speaking Parkinson’s community.

Stay up to date with the latest Parkinson’s Foundation programs, research and happenings in our Parkinson’s Today blog.