Parkinson's Foundation Issues First Patient-Centered Research Agenda for Women Living with Parkinson’s
MIAMI & NEW YORK (March 25, 2019) — Recognizing long-standing gender disparities in Parkinson’s research and care, the Parkinson’s Foundation Women and Parkinson’s Initiative has created the first patient-centered action agenda to maximize quality of life for women with Parkinson’s disease.
“The Parkinson’s Foundation is fully invested in improving health outcomes for women with Parkinson’s, and this research agenda has been a critical next step," said Veronica Todaro, executive vice president and chief operating officer of the Parkinson’s Foundation. “This initiative is a demonstration of our commitment to community collaboration and developing approaches to advance treatment and care for underserved communities.”
Over the past two years, the Parkinson’s Foundation hosted 10 regional forms and one national forum where women with Parkinson’s and healthcare professionals gathered to recommend priorities in research and care. Through this collaboration, the Parkinson’s Foundation has developed comprehensive, patient-centered priorities that provide an opportunity to change the ways in which Parkinson’s is studied and treated in women.
“Historically, Parkinson’s care has been based on research that has focused too narrowly on men or has neglected to consider relevant gender differences.” said Allison W. Willis, MD, MS, physician scientist co-leader of the women and PD project, assistant professor of neurology and of epidemiology at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence. “The Parkinson’s Foundation is defining gender-specific research and care practices and working with health care professionals to improve care provided to women with Parkinson’s.”
The agenda, Women and Parkinson’s: Closing the Gender Gap in Research and Care, identified nine priorities, including:
- ensuring that research is relevant to women with Parkinson’s including an understanding of why women are at reduced risk for developing Parkinson’s;
- use of shared decision-making tools between medical professionals and women with Parkinson’s to promote effective communication in the creation of treatment goals;
- involving care partners and targeting resources to help them manage their own mental health and well-being; and
- providing women with Parkinson’s with the knowledge and tools early in their diagnosis to maintain a desired quality of life.
The Parkinson’s Foundation is driving this agenda forward through:
- hosting a convening of experts to identify critical research questions examining gender differences in Parkinson’s risk;
- supporting research through the Parkinson’s Outcomes Project, the largest ongoing clinical study of Parkinson’s, to identify gender differences in clinical care;
- partnering with the Foundation’s Centers of Excellence network to develop and evaluate a clinical shared-decision making tool;
- sponsoring an education symposium focused on the mental health and well-being of male and female care partners; and
- expanding community-based educational programs for women with PD and investing in self-management resources that target women newly diagnosed with PD.
“Gender accountability in medical research and care, that women experience Parkinson’s disease differently from men, is patient-centered outcomes research at its best,” said Ann Boylan, MA, Parkinson’s advocate and woman living with PD. “We need updated and comprehensive information looking at how women are impacted by PD. This is a medical first, and I am grateful to the Parkinson’s Foundation for leading the way.”
The Women and Parkinson's Teams to Advance Learning and Knowledge (Women and PD TALK) project was funded through a Patient-Centered Outcomes Research Institute (PCORI) award.
To find a local Women and Parkinson’s event, please visit Parkinson.org/Events or call our Helpline, 1-800-4PD-INFO.
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. Since 1957, the Parkinson’s Foundation has invested more than $400 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, Twitter, Instagram 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 U.S. 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 U.S. alone.