Parkinson’s Outcomes Project Enrolls 10,000th Patient and Releases Key Findings

Wednesday, January 10, 2018

The "Parkinson's Outcomes Project," launched in 2009 as a small pilot and funded by the Parkinson's Foundation, met a major milestone goal with the enrollment of its 10,000th patient.  This clinical study, the largest of Parkinson’s disease (PD) to date, has grown to international scope and includes 29 expert clinics and investigators in the United States, the Netherlands, Canada, and Israel. Over 25,000 clinical visits and information from almost 9,000 family care partners are incorporated.  The study includes both newly diagnosed and those with chronic illness, regardless of age at diagnosis. Over 100 participants have lived with PD for more than 30 years, and 83 participants were diagnosed prior to the age of 30 years.

The Parkinson's Outcomes Project evaluates a broad range of factors that affect PD patients, including the benefits and efficacy of medications and therapy, motor symptoms, cognitive effects, best candidates for specific treatments, benefits of exercise, caregiver impacts, and the role of anxiety and depression.  

Peter Schmidt, PhD, Senior Vice President, Chief Research and Clinical Officer of the Parkinson's Foundation said, ". . .our goal was to understand the impact of Parkinson's on everyone living with the disease. . .  (and) represents the broadest and most inclusive patient population ever assembled in a clinical study of Parkinson's. The data we are collecting is informing trials to deliver new and better therapies."

Key findings include the importance of regular care from a neurologist for patients with PD, noting this could be life-saving for thousands. The importance of mental health care has also been shown, as depression and anxiety are identified by the study as key factors determining the overall health of patients with PD.  Exercise as part of the treatment plan is also emphasized as increasing general movement to 2.5 hours per week slows the decline in quality of life.

As reported in the journal Neurology last December, the Parkinson's Outcomes Project has also shown that women with PD are at a disadvantage compared to men with PD, because women receive less regular support from caregivers throughout the course of their illness, and less caregiving from family versus paid caregivers for everything from daily care to doctor visits (Neurology. 2017 Dec 14. pii:S1353-8020(17)30838-6). The lead author, Nabila Dahodwala, MD, MS, from the University of Pennsylvania emphasized the significance of this finding as informal care is a vital component of care for people with PD. Understanding how best to provide day-to-day care can help improve the quality of life for patients and their families.

John L. Lehr, Chief Executive Officer of the Parkinson's Foundation said, "the Parkinson's Foundation recently established the Women and PD Initiative to address significant gender differences in the experience of Parkinson's.. . shedding light on and finding solutions for women-specific issues to help improve the health and well-being of women living with Parkinson's."

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