In Parkinson’s disease (PD), there is evidence of differences in women’s symptoms, medication side effects, and access to care. There are pockets of disparate information, with little uptake by women with PD and the medical community. There is no coordinated national effort for the identification, implementation, and dissemination of evidence-based findings to help women, clinicians, and scientists be better informed as it relates to the development of research questions and healthcare decisions. Women and Parkinson’s Disease: Teams to Advance Learning and Knowledge (Women and PD TALK) would create the first nationally coordinated and supported team-based infrastructure for identifying, implementing, and disseminating patient-centered outcomes research (PCOR) of importance to women with PD. The objectives of this project are to:
- Identify a prioritized, patient-centered women-with-Parkinson’s research agenda
- Increase knowledge among women with PD, clinicians, and researchers about what is known about current and emerging evidence-based findings related to women with Parkinson’s
- Create and support local multidisciplinary teams in identifying, implementing, and disseminating PCOR for women with PD
- Create a sustainable infrastructure that can serve as a model for the Parkinson’s community as a whole as well as other chronic diseases
The long-term objectives of Women and PD TALK are to increase the number of comparative effectiveness studies conducted that address the needs and priorities of women and PD and ultimately help women with PD and medical professionals make better-informed healthcare decisions.
The Women and PD TALK project will: utilize a multi-stakeholder co-led project oversight and management structure that includes women living with PD and a physician clinical researcher; create and convene a Women and PD TALK national team comprised of key national decision makers and drivers of Parkinson’s research; create and convene 10 Women and PD TALK regional teams co-led by a woman with PD, a physician clinician/researcher, and a non-physician health professional; collaborate with the regional team co-leads in organizing 10 Women and PD TALK regional forums; and convene a Women and PD TALK national forum to create a prioritized, patient-centered women-and-PD research agenda and disseminate this agenda and recommendations. The project will also create a toolkit to provide a roadmap for organizing regional forums that accomplish the aims of disseminating current and emerging research findings, obtaining real-world input on research needs and priorities, and building a community and team with the intent of ongoing collaboration.
Improving Life for Women with Parkinson's Disease
By 2020 nearly one million Americans will be living with Parkinson’s disease (PD). While the neurogenerative disorder is traditionally thought to affect mostly men, many women also live with the disease. Yet, they find their voices underrepresented in PD research. A Eugene Washington PCORI Engagement Award supported the Parkinson Foundation’s efforts to change that by creating a Parkinson’s research and care agenda for women.