Background: There has been a lack of Parkinson’s disease (PD) research in minority communities, which makes it difficult to know how best to treat people with PD in these communities.
Proposed Solution to the Problem: In order to solve this problem, current gaps in research must be identified and this research must be funded. The American Parkinson Disease Association (APDA) proposes to organize a conference that will bring together the stakeholders in this field including patients and their care partners, patient advocacy groups, clinicians, and those researching the biological and sociological differences in PD in minority populations. The conference will fuel discussion as to the gaps in research and culminate in the development of a Request for Applications (RFA) for a grant to be funded by APDA.
Objectives: The conference goals are:
- To present the latest available research into the clinical care, clinical outcomes, prevalence, manifestations of disease, genetics, and bio-markers of PD in populations that are typically underrepresented in PD research
- To identify the gaps in the current research through patient participation and input from other scientific fields
- To create a funding mechanism for the gaps identified
The long-term objective of the conference is to understand the unanswered questions in the field of diversity in PD research, with the ultimate goal of fostering high-quality PD care for everyone in the United States.
Activities: The project team will convene a conference to present the current data from experts in the field and to solidify the future research questions that need to be addressed in order to better serve and treat everyone impacted by PD.
Outcomes and Outputs (projected): Once the fundamental research questions have been outlined, APDA will create an RFA to offer funding opportunities to address these research gaps.
Patient and Stakeholder Engagement Plan: People with PD and their care partners will participate in planning for the conference, ensuring that topics that are relevant to patients and caregivers are incorporated. They will also present their point of view at the conference regarding issues such as the ability to access care and participation in clinical trials. They will also be involved in the review of the grant applications that are solicited via the RFA that the conference will help to design.
Project Collaborators: Researchers from across the country will present at the conference.