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

Largest Clinical Study of Parkinson’s Disease Reaches 10,000-Patient Milestone, Reveals Critical Learnings

NEW YORK & MIAMI - January 10, 2018 - The Parkinson’s Foundation today announced the enrollment of the 10,000th Parkinson’s patient and the discovery of critical new learnings in what represents the largest clinical study of Parkinson’s disease in history. Launched in 2009, the study has grown from a small pilot to 29 expert clinics in five countries and serves as a platform for clinical studies to improve the lives of everyone with Parkinson’s. 

Specifically, the “Parkinson’s Outcomes Project” evaluates the complete range of factors associated with Parkinson’s disease: medications and other treatments, motor symptoms, cognition, anxiety A feeling of nervousness, worried thoughts and physical distress. and depression A mood disorder whose symptoms can include a persistent sad or empty mood, feelings of hopelessness or pessimism, irritability and loss of interest or pleasure in previously enjoyable activities., and caregiver burden. The study, which includes more than 100 people who have lived with Parkinson’s for more than 30 years and 83 people diagnosed before they were 30 years of age, covers more than 25,000 clinical visits and input from almost 9,000 family care partners. Critical discoveries from the study include:

  • Regular neurologist care, which could save the lives of thousands of people every year, should be better prioritized by Parkinson’s patients and caregivers
  • Greater attention should be paid to physical activity, as increasing exercise and general movement to at least two-and-a-half hours a week slows the decline in quality of life
  • Mental health should be better prioritized, as depression and anxiety are leading factors determining the overall health status of patients
  • Gender differences from informal family caregivers for women with Parkinson’s is putting them at a disadvantage, and greater awareness is needed. Women with Parkinson’s are more likely to have a paid caregiver than men at the same stage, unlike men who are more likely to rely on their spouses and family members for support with everything from daily care to doctor visits

“When the foundation launched the Parkinson’s Outcomes Project nine years ago, our goal was to understand the impact of Parkinson’s on everyone living with the disease. We have obtained a wealth of information in what now represents the broadest and most inclusive patient population ever assembled in a clinical study of Parkinson’s,” said Peter Schmidt, PhD, Senior Vice President, Chief Research and Clinical Officer of the Parkinson’s Foundation, who leads the study. “The data we are collecting is informing trials to deliver new and better therapies.”

Added Thomas Davis, MD, Director of Movement Disorders at Vanderbilt University, study co-chair: “This project is truly innovative in that it not only follows thousands of patients over time, but that it studies everyone with Parkinson’s, from the newly diagnosed to people who have lived with the disease for 30 years or more. We’re working to ensure that every patient receives the best possible care, no matter where they’re seen.”

The Parkinson’s Foundation partners with its vast network of Centers of Excellence, leading academic and medical institutions around the world, to determine which Parkinson’s care teams achieve the best results and why. The network is comprised of 42 medical centers that deliver care to more than 100,000 people with Parkinson’s every year. Parkinson’s Foundation Center of Excellence status is the most respected and sought-after designation in the field of Movement Disorders, with each center required to meet rigorous clinical, research, professional education and patient service criteria.

“We are studying the quality of Parkinson’s care delivered at our Centers of Excellence to help patients who aren’t being seen at one,” said Fernando Cubillos, MD, who oversees operations for the Parkinson’s Outcomes Project. “Our goal is to help identify the best care and disseminate that information widely.”

The Parkinson’s Outcomes Project is led by a steering committee with members from each participating clinic and rotating co-chairs. The current co-chairs are: Kelly Lyons, PhD, Kansas Medical Center; Thomas Davis, MD, Vanderbilt University Medical Center; and Adolfo Ramirez-Zamora, MD, University of Florida. Gene Nelson, DSc, from the Dartmouth Institute for Health Policy & Clinical Practice, serves as advisor on quality programs. 

For more information about the study, visit www.parkinson.org/outcomes.

About the Parkinson’s Foundation 
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. For more information, visit www.parkinson.org or call (800) 4PD-INFO (473-4636).

About Parkinson’s Disease 
Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the United States alone.

Wednesday, January 10, 2018
Parkinson’s Disease Foundation Opens $500,000 in Grant Funding, Urges Scientists to Address Key Unmet Needs in Patient Community
Thursday, July 21, 2016

New Awards Fund Translational Patient-Driven Research Projects

Parkinson's Disease Foundation Invests in Next Generation of Patient Leaders
Friday, July 15, 2016

The Parkinson's Disease Foundation® (PDF®) is pleased to welcome 20 people with Parkinson's disease and care partners to its national research advocacy network. These individuals join more than 325 patient leaders who are helping PDF solve, treat and end Parkinson's disease.

The National Parkinson Foundation’s Moving Day® Walks Fund Parkinson’s Programs in Six Cities
Monday, June 27, 2016

MIAMI — The National Parkinson Foundation (NPF) is proud to announce that the 2015 fall walk season of Moving Day®, A Walk for Parkinson’s, has funded nearly $300,000 in mission services to make life better for people living with Parkinson’s and their caregivers in six communities.

NPF and Global Kinetics Corporation Announce the Commencement of a Clinical Trial to Study Impact of Personal KinetiGraph Use in Routine Clinical Care of Patients with Parkinson's Disease
Wednesday, June 22, 2016

A multi-center, randomized controlled trial to assess whether the use of continuous objective measurement of changes in mobility in patients with Parkinson’s disease can improve physician treatment decisions and patient outcomes.

The National Parkinson Foundation Partners with Honor to Help the Home Care Company Deliver Personalized Care in the Home
Tuesday, June 21, 2016

The National Parkinson Foundation (NPF) and Honor home care announced today a collaborative partnership to bring personalized care in the home to people diagnosed with Parkinson’s.  Honor will license the NPF’s proprietary care guidance.

The National Parkinson Foundation Announces New Findings from Largest-Ever Parkinson’s Study of 8,000 Patients Worldwide
Monday, June 20, 2016

Latest Data Point To Improve Patient Care Through Precision Treatment

PDF Research Advocates Guide $16 Million in Parkinson’s Research Funding
Wednesday, June 15, 2016

Recently, two Parkinson’s Disease Foundation (PDF) volunteers helped guide $16 million in government funding for Parkinson’s disease (PD) research.

This spring, Sam Erwin, M.S., M.A., of West Des Moines, IA, and Paul Zimmet, D.D.S., of Reston, VA – both PDF Research Advocates, people living with PD and US Army Veterans – served as consumer reviewers of research funded by the US Department of Defense (DoD).

Parkinson's Disease Foundation Announces $4 Million in Research Investments to Solve, Treat and End Parkinson's Disease
Thursday, June 9, 2016

Research Funding for Early-Career Scientists Reflects Urgent Need for Better Therapies

Adaptive Athlete Announces 300 Skydives in 24 Hours
Wednesday, June 8, 2016

“300 Imperfect Jumps” Raises Funds for Parkinson’s Disease Research

NPF Celebrates the Life and the Legend of Muhammad Ali
Saturday, June 4, 2016

MIAMI — Today we mourn the loss and celebrate the life of Muhammad Ali, a longtime friend of the National Parkinson Foundation (NPF). Mr. Ali passed away at age 74 after being hospitalized for respiratory problems, a common complication in advanced Parkinson’s disease.

Pages

mail icon

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