University of Washington Alzheimer’s Disease Research Center (UW ADRC): Native Engagement and Partnership Core (NEPC)

Status: Current

Alzheimer’s disease and related dementias (ADRD) research in the US is limited by underrepresentation of racial and ethnic minorities. In particular, for decades American Indian and Alaska Native (AI/AN) people were nearly absent from any ADRD research, so that today very little is known about ADRD prevalence, risk or protective factors, or perceptions in this culturally and sociodemographically unique population. The NIH and other organizations are actively calling for ADRD clinical trials to increase representation of AI/AN people and other historically underrepresented groups, but investigators attempting to meet this need often struggle to achieve recruitment goals. Accordingly, there is a need for studies to identify best practices for increasing the recruitment of AI/AN people in ADRD research. Partnerships with AI/AN communities are challenged by distrust of scientific research, misunderstandings, or competing priorities between researchers and communities. These sentiments have led to widespread reluctance to engage in research, especially when biospecimens such as blood or genetic material are collected for unspecified “future use.” No evidence-based methods exist that are proven to increase AI/AN recruitment into ADRD clinical trials, including those where biospecimens are collected. Led by Indigenous members of Washington State University’s (WSU) Institute for Research and Education to Advance Community Health (IREACH), the Native Engagement and Partnership Core (NEPC) of the University of Washington Alzheimer’s Disease Research Center (UW ADRC) will address these gaps and needs. Through their ongoing ADRD-focused research efforts, NEPC investigators have been essential in building a large network of relationships with AI/AN communities. They will further leverage IREACH’s strong relationships with community partners in Washington state and elsewhere to ensure the inclusion of a meaningful sample of AI/AN Elders in the UW ADRC’s efforts. Our Specific Aims are to: 1) Establish a Community Action Board to advise on ADRD outreach and AI/AN inclusion in research; 2) Expand the NEPC by enrolling AI/ANs into the IREACH registry, including a subset with mild cognitive impairment and a subset with normal cognition into the UW ADRC Clinical Core each year; 3) Conduct and evaluate outreach, engagement, and dissemination efforts that increase AI/AN knowledge and awareness of ADRD and research opportunities; and 4) Interview AI/ANs enrolled in the Clinical Core to assess experience in enrolling in an ADRD clinical trial; review toolkits and resources available for recruiting participants into ADRD clinical trials; and determine strategies for communication about biomarkers and return of results. This study promises to increase AI/AN representation in ADRD clinical studies, build trust in research and researchers, and determine culturally appropriate methods to communicate about biomarkers and genetic research. Through research on effective communication about biomarkers and return of results, we will develop strategies to provide information on ADRD and genetic testing to AI/AN individuals and communities, in alignment with NIH priorities to increase diversity in research participation, particularly ADRD clinical trials.

We are currently recruiting AI/AN participants to receive $200 for participating in our study. Please call Breanna Jones at 509-339-0920 if you are interested in learning more.

http://depts.washington.edu/mbwc/adrc/page/nrrc

IREACH Programs

• University of Washington Alzheimer’s Disease Research Center

Principal Investigator(s)

• Amanda Boyd, PhD

Team Member(s)

• Patrik Johansson, MD, MPH
  Co-Investigator
• Cole Allick, PhD, MHA
  Co-Investigator
• Duncan Amegbletor, PhD
  Senior Research Project Manager
• Breanna Jones
  Research Coordinator
• Angie Suh
  Research Study Assistant

Heath Research Initiatives

• American Indian and Alaska Native
• Rural
• Urban

Focus Areas

• Alzheimer's disease
• Health disparities