Overview: The National Institute on Aging (NIA) will be hosting a virtual meeting to discuss the potential and planning of a practice-based research network (PBRN) to address the disparities gap with the recruitment and retention of diverse and underserved populations to AD/ADRD clinical research studies.
PBRNs are groups of health care clinicians and practices working together to answer community-based health care questions and translate research findings into practice—they have the potential to directly engage diverse and underserved communities in AD/ADRD clinical research. Attendees will leave with a clear understanding of what a PBRN is, learn about NIH and external PBRN examples, and provide input for future considerations regarding the use of a PBRN.
Rationale: In October 2018, the NIA and its partners released Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research, an overarching plan to address four themes: 1) increase awareness and engagement at a broad, national level; 2) build and improve capacity and infrastructure at the study site level; 3) engage local communities and support participants; and 4) develop an applied science of recruitment.
Data indicate that Blacks/African Americans, Latinos/Hispanic Americans, Asian American and Pacific Islanders (AAPI), and other minority populations are substantially underrepresented in AD/ADRD clinical studies and that too few clinical studies and limited research infrastructure are available in their communities. A long-term solution is to invest in efforts that will build sustainably and mutually beneficial relationships within diverse and underserved communities.
Given the high interest in this webinar, we are seeking input from attendees in advance to ensure that the speakers address your key questions. Please take a few minutes to complete a brief Google poll by April 13th.
2:00 PM - 2:20 PM
Welcome: Marie Bernard, M.D., Deputy Director, NIA and Holly Massett, Ph.D., Senior Advisor on Clinical Research Recruitment and Engagement, NIA
Introductory Remarks: Janet Woodcock, M.D., Acting Commissioner, FDA
2:20 PM - 3:10 PM
Keynote Speaker: Jonathan Tobin, Ph.D.
What is a Practice-Based Research Network?
Dr. Tobin will provide an overview of PBRNs, including sponsorship and governanace models, and the roles and priorities of key stakeholders, such as academic researchers, clinician researchers, and patients. He also will describe examples of PBRNs.
3:10 PM - 4:00 PM
Keynote Speaker: Lori Minasian, M.D.
Lessons Learned: Development and History of the National Cancer Institute's Community Clinical Oncology Program (CCOP)
Dr. Minasian will discuss the development and history of NCI's Community Clinical Oncology Program, how it functioned, its achievements and influence on other NIH networks, and its evolution into the NCI Community Oncology Research Program (NCORP).
4:00 PM - 4:55 PM
Panel Speakers: Jennifer Manly, Ph.D., Andrea Gilmore-Bykovskyi, Ph.D., R.N., and Jaime Perales Puchalt, Ph.D., M.P.H., and Jonathan Jackson, Ph.D.
Key Considerations for the Planning and Development of a PBRN for AD/ADRD
Our panelists will discuss important considerations in planning for and establishing a PBRN for conducting AD/ADRD research, including topics related to investment and infrastructure needs, engaging underserved populations, accountability, and relationships among the PBRN sites.
4:55 PM - 5:00 PM