As our multicultural nation ages, the population of older adults over age 65 is projected to become increasingly racially and ethnically diverse.
This growing diversity has significant impacts on the way people access health care, how services are delivered, and in the research that seeks to address the complex needs of older adults.
Scientists at the UCSF School of Nursing are leading projects and developing policy recommendations to improve the health of diverse older adults, and to ensure that aging research is both reflective of and responsive to their needs.
The First AAPI Registry of Its Kind in the Nation
Studies have shown that communities of color are underrepresented in research. Asian Americans and Pacific Islanders (AAPI) are among the least represented, with clinical research projects focusing on AAPI participants making up 0.17% of NIH-funded research.
To address this issue, professor Van Ta Park and her team are building a registry — the first of its kind in the country — to enable meaningful inclusion of AAPIs in clinical research studies.
Backed by a $3.4 million grant from the National Institutes of Health, the CARE Registry is a database of AAPI adults who are willing to participate in research in Alzheimer’s disease and related dementias, aging, caregiving and other health topics across the lifespan.
Through community partnerships, social media and ethnic media outreach, Park and her team have recruited more than 7,600 AAPIs into the registry in the last year and a half. Each participant completes a survey — available in six languages — regarding their socio-demographic background, health, caregiving status, and willingness to be contacted about participating in research studies.
“A large reason for the underrepresentation of AAPIs in research is due to the limited outreach and engagement to AAPI communities. What CARE has demonstrated, even during a pandemic, is that AAPIs want to be engaged in conversations about research,” Park said. “They’re willing to put their names in a registry to be contacted about potential research opportunities, and this is significant, given that 80% of the 7,600 CARE participants reported having no prior experience with research.”
The registry has attracted widespread attention. Park has been invited to speak before multiple federal agencies such as the National Institutes of Health and the Food and Drug Administration. Collaboration requests have come from as far away as Australia.
Throughout the year, CARE invites researchers and community stakeholders to Brain Trust meetings to learn how the registry can help them solve the problem of underrepresentation of AAPIs in their projects. So far, the registry has received 34 data requests from scientists nationwide studying a range of topics including aging, caregiving and COVID-19 vaccination.
New Consorcio Seeks to Increase Latinx Engagement in Clinical Trials on Dementia
The same motivation drives associate professor Elena Portacolone in her quest to increase Latinx representation in clinical trials on dementia. Latinos make up 18 percent of the U.S. population, yet they comprise about 4 percent of research participants.
“Communities of color are more likely to develop dementia but nationally, they make up a small fraction of participants in clinical trials,” Portacolone explained. “If treatments against dementia are created from trials with only white participants, it might not work well for Latinos and Black Americans.”
With a $2.4 million NIH grant, Portacolone has established a consortium among UCSF, the Alzheimer’s Association and the National Association of Hispanic Nurses to launch a one-year campaign starting this March to increase Latinx engagement in dementia research. Additional principal investigators include Adriana Perez, a Latina nurse and assistant professor at the University of Pennsylvania, and Carl V. Hill, the Chief of Equity, Diversity and Inclusion from the Alzheimer’s Association.
Read the rest of the story in our Science of Caring online publication.