Parkinson’s Foundation Launches Palliative Care Program Across U.S. Centers of Excellence

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Funds awarded by the Patient-Centered Outcomes Research Institute

MIAMI & NEW YORK – August 11, 2020 – The Parkinson’s Foundation is partnering with the University of Rochester Medical Center, a Parkinson’s Foundation Center of Excellence, to launch an initiative to make palliative care a standard practice across all Centers of Excellence in the U.S. The award was granted to the University of Rochester Medical Center by the Patient-Centered Outcomes Research Institute (PCORI).

The PCORI funds will support a new program providing customized training to 33 Parkinson’s Foundation Centers of Excellence, designated medical centers with a specialized Parkinson’s disease (PD) care team that practices the latest treatments and research while providing the best care. The project titled Implementing Team-based Outpatient Palliative Care in Parkinson Foundation Centers of Excellence is led by Benzi M. Kluger, MD, MS, Founding Director of the Palliative Care Research Center and Neuropalliative Care Division at the University of Rochester Medical Center who has conducted multiple studies on palliative care and has seen its benefits first-hand among patients and their families. Nicole Yarab, BA, RN, Vice President, Clinical Affairs at the Parkinson’s Foundation is the co-principal investigator.

“The Parkinson’s Foundation is creating a cutting-edge program that will add a new level of support to help people with Parkinson’s disease and their care partners, providing them with the additional care they need throughout their entire Parkinson’s journey,” said John L. Lehr, President and Chief Executive Officer of the Parkinson’s Foundation. “The added training for Center of Excellence healthcare professionals and the telemedicine focus for this program will be essential to providing better care for the Parkinson’s community during this pandemic and beyond.”

Palliative care is proven to help people live as well as possible for as long as possible. In a previous PCORI-funded study, Dr. Kluger and his team showed that palliative care for people with Parkinson’s improves quality of life; improves detection and management of non-motor symptoms; addresses known gaps in PD care including caregiver support and advance care planning; and can be delivered by teams without specialized training if they receive appropriate guidance.

“It’s exciting because Centers of Excellence are international leaders in Parkinson’s care,” Dr. Kluger said. “If successful, in the next three years, team-based palliative care will be a new standard at Centers of Excellence, a new option for everyone who seeks treatment in these centers and a new skillset for the healthcare professionals who train at these Centers of Excellence.”

The rise of COVID-19 prompted the Parkinson’s Foundation and Dr. Kluger to evolve the originally planned in-person training program into a virtual setting. PCORI provided a “COVID-19-Related Project Enhancement” award for Dr. Kluger and the Parkinson’s Foundation team to lead personalized virtual training sessions for every Center of Excellence team. The virtual training will address palliative care patient needs and additional COVID-19 related topics.

The Parkinson’s Foundation and Dr. Kluger were selected for PCORI funding through a highly competitive review process in which patients, clinicians and other stakeholders joined clinical scientists to evaluate the proposals. Applications were assessed for scientific merit, how well they will engage patients and other stakeholders and their methodological rigor among other criteria.

“This project was selected for PCORI funding not only for its scientific merit and commitment to engaging patients and other stakeholders, but also for its potential to fill an important gap in our health knowledge and give people information to help them weigh the effectiveness of their care options,” said PCORI Executive Director Nakela L. Cook, MD, MPH. “We look forward to following the study’s progress and working with the Parkinson’s Foundation to share the results.”

PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. This is the third PCORI grant the Parkinson’s Foundation has received since 2017.

Find more information about the Parkinson’s Foundation Centers of Excellence network or locate your nearest center.

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About the Parkinson’s Foundation

The Parkinson’s Foundation makes life better for people living 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 nearly 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.

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