Call Our HELPLINE: 1-800-4PD-INFO (473-4636)

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.

Monday, June 15, 2015
Parkinson's Foundation Study Finds Gender Disparities in Caregiving, with Women at a Disadvantage
Monday, December 4, 2017

Largest Clinical Study Tracking Parkinson’s Patients Over Time Shows Women with Parkinson’s Have Fewer Caregiving Resources than Men with Parkinson’s

Parkinson’s Foundation Invests $60,000 to Develop Innovative Models of Patient Engagement
Wednesday, November 29, 2017

Six Awards Foster Patient-Driven Parkinson’s Research

Jesse Jackson Diagnosed with Parkinson's Disease
Friday, November 17, 2017

Rev. Jesse Jackson’s announcement today that he has been living with Parkinson’s Disease since 2015 further proves that receiving a diagnosis of Parkinson's is not a death sentence. There are many ways that people living with Parkinson's can control the symptoms of the disease with exercise and physical therapy to help maintain mobility and balance.

Update on Tozadenant Trial for Parkinson’s
Thursday, November 16, 2017

On 11/20/17, Acorda Therapeutics, Inc. announced that it is discontinuing the tozadenant clinical trial.  They concluded that they could not be confident that weekly white blood cell count screening would sufficiently ensure patient safety.

Parkinson’s Foundation Adds Marcia Mondavi Borger to Board of Directors
Tuesday, November 14, 2017

NEW YORK & MIAMI — The Parkinson’s Foundation today announced the election of Marcia Mondavi Borger to its Board of Directors.

Parkinson’s Foundation and Melvin Yahr International Parkinson’s Disease Foundation Announce Merger
Thursday, October 26, 2017

Parkinson’s Foundation Establishes ‘Dr. Melvin Yahr Research Award’ to Fund Neurology Fellows, Promote Leadership Diversity in Parkinson’s Research

Parkinson’s Foundation Welcomes Two New Board Members
Tuesday, October 24, 2017

Peter Goldman and Joshua Raskin Join Board of Directors

NEW YORK & MIAMI — The Parkinson’s Foundation today announced the election of Chicago entrepreneur Peter Goldman and New York financial analyst Joshua Raskin to its Board of Directors.

Parkinson's Foundation Unveils New Brand and Website
Thursday, October 19, 2017

NEW YORK and MIAMI /PRNewswire-USNewswire/ — The Parkinson's Foundation today announced the launch of its new brand and website following the recent merger of two legacy organizations – National Parkinson Foundation and Parkinson's Disease Foundation – as part of its mission to

FDA Approves Extended-Release Amantadine (GOCOVRI™) for Treatment of Dyskinesia
Friday, August 25, 2017

Statement from the Parkinson's Foundation Medical Director, Michael Okun, MD

Parkinson’s Foundation Announces $1.2 Million Investment to Advance Careers, Support Innovation of Early Career Parkinson’s Scientists
Tuesday, August 8, 2017

NEW YORK & MIAMI The Parkinson's Foundation is pleased to announce a $1.2 million investment in 27 career development and fellowship grants to support the work of promising early career scientists in the field of Parkinson's.


mail icon

Subscribe to get the latest news on treatments, research and other updates.