Development of an NIA Practice-Based Research Network to Conduct Alzheimer’s and Related Dementias Clinical Research

a Workshop

Friday, 04/30/2021, 2:00 pm to 5:00 pm.

Location: Online

Overview: 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 National Institute on Aging  (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.

 

Keynote Speakers: Lori Minasian, M.D. and Jonathan Tobin, Ph.D.

Panel Speakers: Jennifer Manly, Ph.D., Andrea Gilmore-Bykovskyi, Ph.D., RN, and Jonathan Jackson, Ph.D.

Registration Info.