The Ins and Outs of Participating in Parkinson’s Research

The Latin phrase sine qua non translates into ‘without which, there is nothing.’ People with Parkinson’s disease (PD) who participate in research are the sine qua non of the research team. Marilyn Neault is the first-ever person with Parkinson’s who is helping the Parkinson’s Foundation guide its Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s. As a steering committee member, she voices the viewpoints of people with Parkinson’s as they relate to the groundbreaking study.

“I find it both humbling and exciting to be a ‘patient voice,’ expressing my own viewpoint while channeling the viewpoints of others,” Marilyn said. As Marilyn puts it, as a member of the steering committee, she weighs in on multiple large-scale issues on behalf of people living with the disease:

• How would we (people with Parkinson’s) react, when our care team asks to deposit each chapter of our personal medical stories into an information library, with our names replaced by numbers?  
• Can we understand the forms and explanations?
• How can the study shine a light on our problems, and predict what would help?
• What motivates us to attend visits on schedule?
• What would convince us that our participation is valuable?

With fiercely dedicated effort, since 2009 the Parkinson’s Outcomes Project team keeps essential data anonymized from more than 13,000 patients and growing to include two dozen Parkinson’s Foundation Centers of Excellence around the world.

“I have the greatest respect for my fellow steering committee members, who contribute topnotch knowledge, sensitivity and teamwork,” Marilyn said. “Steering committee meetings focus on nurturing the data set, harvesting ripe fruit and feeding the research efforts of scientists, to improve care in areas that make a difference to people with Parkinson’s.”

Marilyn’s dedication is already impacting the steering committee. "People like Marilyn bring expertise from the lived experience of Parkinson's that is invaluable in informing what we do and ensuring that how we do it is respectful of the interests and abilities of the participants,” said Connie Maras, Parkinson’s Outcomes Project principal investigator. “Marilyn's combination of experience as a person with PD and a researcher gives her a unique ability to inform what we do."

As a retired clinician and researcher from the auditory field, Marilyn appreciates the committee’s effectiveness. “The committee’s focus reminds me of the fortune-cookie saying, ‘To be a difference, a difference must make a difference.’”

After attending her first in-person meeting with the steering committee, she felt incredibly grateful that “so many bright, busy people are working hard on a problem that I have. The committee members have adopted our challenge, Parkinson’s, as their own. Research participants with Parkinson’s should feel devoted to holding up our end of the bargain.”

Her Parkinson’s Foundation engagement has also inspired her. “Witnessing my fellow committee members’ dedication to improving the quality of my life makes me take better care of myself, exercising more, eating better and nurturing friendships,” Marilyn said. “The Parkinson’s Foundation’s commitment to using the Parkinson’s Outcomes Project for maximum benefit illustrates why giving to the Foundation, and encouraging others to do so, gives donors the opportunity in this endeavor.”

Marilyn's advice to her fellow PD community is simple: “Participate, prepare for scheduled appointments and provide complete information.”

Learn more about the Parkinson’s Outcomes Project.