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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
Update on NUPLAZID — FDA finds no new or unexpected safety risks
Friday, September 21, 2018

On September 20, 2018, the U.S. Food and Drug Administration (FDA) issued a review on the drug NUPLAZID (pimavanserin), a medication used to treat patients with hallucinations and delusions associated with Parkinson’s Disease psychosis.

According to the FDA website:

Parkinson’s Foundation Extends Bilingual National Helpline Hours
Tuesday, September 18, 2018

NEW YORK & MIAMI — September 18, 2018 — The Parkinson’s Foundation announced today that its toll-free Helpline, 1-800-4PD-INFO, will extend its hours, answering calls in English and Spanish, to help make life better for people with Parkinson’s disease (PD) and their families.

Parkinson’s Foundation Hosts Allied Team Training for Parkinson’s in Atlanta
Tuesday, September 11, 2018

NEW YORK & MIAMI—September 11, 2018—The Parkinson’s Foundation today announced the location of its signature professional education program course, Allied Team Training for Parkinson’s, ATTP®, for health care professionals treating patients with Parkinson’s disease, in Atlanta.

Parkinson’s Foundation Increases Funding to $6.2 Million to Advance Parkinson’s Research
Tuesday, August 14, 2018

NEW YORK & MIAMI — August 14, 2018 — The Parkinson’s Foundation announced today an increased investment of $6.2 million across 53 research grants to support the work of promising scientists in the field of Parkinson's disease (PD) in 2018.

PD Gladiators Merges with the Parkinson’s Foundation Expanding Reach in Greater Atlanta Parkinson’s Community
Wednesday, August 1, 2018

ATLANTA – August 1, 2018—PD Gladiators, Inc., an Atlanta-based nonprofit organization focused on combatting Parkinson’s disease (PD) with vigorous exercise, has merged with the Parkinson’s Foundation (PF), a non-profit organization whose mission is to make life better for people with PD worldwide through expert care and research.

Parkinson’s Foundation Partners with Medscape Education to Deliver Patient Education
Monday, July 30, 2018

July 30, 2018—The Parkinson’s Foundation has collaborated with Medscape Education to launch an online learning program entitled “Parkinson’s Disease Psychosis: A Learning Destination for Care Partners and Patients,” available on Medscape’s patient portal, WebMD Education.

Parkinson’s Foundation Designates Three Centers of Excellence in Parkinson’s Care: Global Network Expands to 45 Parkinson’s Centers
Tuesday, July 24, 2018

MIAMI & NEW YORK CITY — July 24, 2018 — The Parkinson’s Foundation today announced the addition of three new Centers of Excellence to its global network: Cleveland Clinic; Medical University of South Carolina; and University of Iowa Hospitals and Clinics.

Parkinson’s Foundation Funds $450,000 for Local Parkinson’s Programs in Seven Cities Across the Country
Monday, July 23, 2018

NEW YORK & MIAMI — July 23, 2018 — The Parkinson's Foundation today announced it will fund nearly $450,000 to local community grants in seven cities that hosted the Foundation's annual fundraiser, Moving Day, A Walk for Parkinson's, in 2017. These grants will further the health, wellness and education of people with Parkinson's disease (PD).

In Memory of Robert Traurig
Wednesday, July 18, 2018

The Parkinson’s Foundation mourns the loss of emeritus board member Robert (Bob) Traurig. From 2004 to 2015, he was a member of the Foundation’s board of directors. Bob is survived by his wife Jacqueline, his daughters Madeline Sackel and Wendy Traurig.

New Study Shows 1.2 Million People in the United States Estimated to be Living with Parkinson’s Disease by 2030
Tuesday, July 10, 2018

Parkinson’s Foundation Reveals Most Comprehensive Estimate of
Parkinson’s Prevalence in North America since the 1970’s

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