How PD Trial Navigator Engages People with Parkinson’s to Accelerate Clinical Trials

Since its 2019 launch, PD GENEration: Powered by the Parkinson’s Foundation has provided genetic testing and counseling to more than 30,000 people with Parkinson’s disease (PD), empowering them to better understand their genes and family risks. This knowledge also helps advance research. Clinical trials for PD often seek people with specific genetic variants for which a new drug or therapy is designed — an important step toward deepening our understanding of PD.

A new Parkinson’s Foundation pilot program, PD Trial Navigator, connects PD GENEration participants to clinical trials for which they may qualify. With guidance from trained Trial Navigators, people with PD will be able to learn about current clinical trials relevant to them, to support enrollment. Thus, helping advance research toward new therapies and ultimately a cure.

PD Community Feedback is the Compass for PD Trial Navigator

Prior to creating PD Trial Navigator, the Foundation sought to identify what people with PD want from such a program. Evelyn Stevens, Parkinson’s Foundation Senior Director of Research Engagement and Maggie Caulfield, PhD, Director of Research Programs, brought together two focus groups with previous PD GENEration participants to discuss their understanding and interest in clinical trials and personalized medicine.

Key takeaways from the focus groups included:

• Clinical trials seem difficult to join, because of strict eligibility requirements or excessive travel and time needed for participation.
• Communications about research opportunities from neurologists or healthcare partners are mixed and inconsistent, leading to apprehension around clinical trials.
• The term “personalized medicine” is confusing and needs clarification.

“Disease modifying therapies and personalized medicine are approaches that represent a meaningful shift in Parkinson’s care — moving beyond managing symptoms to slowing or stopping disease progression and tailoring research treatment to a person’s unique biology and genetics. Through PD Trial Navigator, we translated focus group insights to build educational resources that help the PD community navigate these approaches with confidence,” said Evelyn.

Dr. Caulfield and Evelyn reviewed the results from the 2024 PD GENEration survey and the 2025 Parkinson’s Foundation State of the Community survey for program-guiding insights. A wide majority of respondents (84%) in the 2024 survey expressed interest in being contacted about clinical trials, with 64% also interested in telehealth trial participation.

The 2025 survey highlighted that most people with PD (52% of respondents) have likely not participated in a clinical trial or research study before but were interested in research updates and relied on digital platforms as their primary resource for PD information.

This valuable input helped the PD Trial Navigator team identify three key educational priorities for the program:

1. Provide illustrative overviews on how disease-modifying therapies work and how they relate to precision medicine.
2. Explain the clinical research process, including eligibility criteria and the importance of placebo groups.
3. Emphasize shared decision-making for informed consent, including care teams and loved ones in the process

This feedback shaped the PD Trial Navigator program, ensuring its design aligns with the needs and priorities of the PD community.

Accelerating Recruitment = Accelerating Research

As PD Trial Navigator helps connect more interested and eligible participants to studies, it will help accelerate trials and research. When less time is spent on recruiting, more time and resources can be devoted to analyzing results and improving future treatment designs.

The NEULARK trial, a Parkinson’s Foundation Industry Consortium Member Study sponsored by Neuron23, is one of the first to benefit from this program in action. Their study requires people with PD and a specific LRRK2 genetic variant or who have overactive LRRK2 activity and who have not begun dopamine medication.

The PD GENEration database, together with Neuron23’s secure, confidential data driven tool, identified more than 2,000 potentially eligible participants, allowing the PD Trial Navigator team to relay the information to the associated healthcare sites to kickstart screening. For those not located at a PD GENEration site, trained Navigators contacted eligible participants directly, offering guidance and answering questions about the process.

"I have only gotten through a portion of the list but have already identified a couple of candidates for NEULARK, a study that is quite challenging to fill. This is a great development and a great example of the potential of PD-gene,” said Joseph Quinn, MD, Vice Chair for Research Parkinson's Center Director at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence. 

By working with PD GENEration and PD Trial Navigator, Neuron23 can find eligible participants more efficiently, speeding up the research process and getting results to the Parkinson’s community faster. These accelerated timelines could cause an effective treatment to be available years earlier than anticipated, changing the lives of those with PD that could benefit from it.

Navigating Toward a Cure

Where PD GENEration is providing awareness and data around PD-related genetic variance, PD Trial Navigator is taking the next step to empower clinical trial engagement through personalized education and outreach. This program, designed around PD community needs, will inspire and advance PD research toward novel treatments and cures.

Evelyn Stevens and Maggie Caulfield will present a research poster on PD Trial Navigator at two upcoming conferences: the Internation Conference on Alzheimer’s and Parkinson’s Diseases and Related Neurological Disorders (AD/PD™) in Copenhagen, Denmark, and the 7^th World Parkison Conference in Phoenix, AZ.

Learn More 

The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure. Learn more with these resources: 

• Learn about and enroll in PD GENEration — a global genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s.

• To learn more about PD Trial Navigator, email PDNavigator@Parkinson.org.

• Discover how the Parkinson’s Foundation is Advancing Research

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