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PDF Survey Finds Patient Input is Critical to Guiding Parkinson’s Research

Data Presented at 19th Annual International Parkinson and Movement Disorders Society Congress in San Diego, CA - Jun 15 2015

Insights from the patient community are critical to guiding scientific research toward unmet needs in Parkinson’s disease (PD), according to the Parkinson’s Disease Foundation. These findings were presented in a poster titled, “Engaging people with Parkinson’s in determining and defining research priorities: The PDF Community Choice Research Awards,” (poster #311), on Monday, June 15 at the 19th International Parkinson and Movement Disorders Society Congress.

“We found that engaging people with Parkinson’s and their care partners in determining research priorities can help us identify unmet needs that warrant attention by scientists,” said lead authorVeronica Todaro, M.P.H., Vice President, National Programs, Parkinson’s Disease Foundation.

The poster looked first at responses from 304 individuals in the patient community who took an online questionnaire for the PDF Community Choice Research Awards in 2013. Of the respondents, 62 percent were female and 35 were male (3 percent chose not to answer). Additionally, 69 percent identified as a person living with Parkinson’s and 23 percent identified as a care partner.

Respondents shared information about which research question in Parkinson’s was most pressing to them. Answers were far reaching, but could be categorized into five general areas: therapies, living with PD, clinical understanding, basic science and genetics/risks. Unsurprisingly, therapies represented the topic area within which the greatest number of responses could be categorized. Ultimately two issues, fatigue (living with Parkinson’s) and gastrointestinal dysfunction (clinical understanding), were selected by PDF reviewers for funding.

PDF supported two conferences to discuss the two patient-chosen research areas (fatigue and gastrointestinal dysfunction) and surveyed 19 research professionals who attended alongside patient representatives. Of those attendees surveyed (n=19), the majority, 95 percent, indicated that patient input enriched the meeting, while 68 percent stated that the experience made them more inclined to include patients in future scientific conversations.

"The PDF Community Choice Awards has brought patient engagement to the next level. As people with Parkinson’s disease, we merit a voice in the decision-making and PDF has opened the doors to allow that with the Community Choice Awards. I know that this input, all from the community, will be invaluable to scientists as they consider research priorities," said Karen Smith, Vice Chair, People with Parkinson's Advisory Council.

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