Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Feb;19(2):433-443.
doi: 10.1002/alz.12667. Epub 2022 Apr 14.

The Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE): A recruitment registry for Alzheimer's disease and related dementias, aging, and caregiver-related research

Van M Ta Park  1   2 , Oanh L Meyer  3 , Janice Y Tsoh  2   4 , Alka M Kanaya  2   5 , Marian Tzuang  1 , Bora Nam  1 , Quyen Vuong  6 , Joon Bang  7 , Ladson Hinton  8 , Dolores Gallagher-Thompson  9   10 , Joshua D Grill  11
Affiliations

The Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE): A recruitment registry for Alzheimer's disease and related dementias, aging, and caregiver-related research

Van M Ta Park et al. Alzheimers Dement. 2023 Feb.

Abstract

Introduction: Clinical research focused on aging, Alzheimer's disease and related dementias (ADRD), and caregiving often does not recruit Asian Americans and Pacific Islanders (AAPIs).

Methods: With funding from the National Institute on Aging, we designed and launched the Collaborative Approach for AAPIs Research and Education (CARE), a research recruitment registry to increase AAPIs' participation in ADRD, aging, and caregiving research. We present the design of this novel recruitment program.

Results: CARE uses community-based participatory research methods that are culturally and linguistically appropriate. Since CARE's launch, it has enrolled >7000 AAPIs in a 1-year period. The majority enrolled in CARE via community organizations and reported never having participated in any kind of research before. CARE also engages researchers by establishing a recruitment referral request protocol.

Discussion: CARE provides a promising venue to foster meaningful inclusion of AAPIs who are under-represented in aging and dementia-related research.

Keywords: Alzheimer's disease; Asian Americans; Pacific Islanders; aging; caregiving; recruitment registry.

PubMed Disclaimer

Conflict of interest statement

CONFLICTS OF INTEREST

The authors declare that they have no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE) enrollment process. Illustration of the enrollment process for CARE participants
FIGURE 2
FIGURE 2
Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE) outreach materials in multiple languages. Clockwise, from the top left corner, examples of CARE outreach materials include CARE website; culturally tailored flyers; monthly e-newsletters in English to all CARE participants and quarterly in-language e-newsletters to Chinese, Korean, and Vietnamese CARE participants; and animated videos to introduce CARE and describe ways to enroll in CARE
FIGURE 3
FIGURE 3
Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE) Registry enrollment as of October 31, 2021. Illustration of CARE enrollment status by month, showing target enrollment number of 10,000 AAPI participants (blue line), projected cumulative enrollment number (purple dotted line), actual cumulative enrollment number (dark green line), and actual monthly enrollment number (light green line)
See this image and copyright information in PMC

References

    1. Alzheimer’s Association. Alzheimer’s Disease Facts and Figures. Accessed October 8, 2021. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
    1. Alzheimer’s Impact Movement. Alzheimer’s Research Funding at NIH Gets Important Boost in House Labor-HHS Appropriations Budget. Accessed October 8, 2021. https://alzimpact.org/press/press_release/id/121
    1. Alzheimer’s Association International Conference. New National Strategy for Recruitment and Participation In Alzheimer’s Disease Clinical Trials Takes Shape. Accessed October 8, 2021. https://www.alz.org/aaic/downloads2018/Mon-pm-briefing-clinical-research...
    1. Grill JD, Holbrook A, Pierce A, Hoang D, Gillen DL. Attitudes toward potential participant registries. J Alzheimers Dis. 2017;56(3):939–946. 10.3233/JAD-160873 - DOI - PMC - PubMed
    1. Grill JD, Karlawish J. Addressing the challenges to successful recruitment and retention in Alzheimer’s disease clinical trials. Alzheimers Res Ther. 2010;2(6):34. 10.1186/alzrt58 - DOI - PMC - PubMed

Publication types