Strategies for the recruitment and retention of racial/ethnic minorities in alzheimer disease and dementia clinical research

Roger Wong, Takashi Amano, Shih Yin Lin, Yuanjin Zhou, Nancy Morrow-Howell

Research output: Contribution to journalReview articlepeer-review

14 Scopus citations

Abstract

Background: Racial/ethnic minorities have among the highest risks for Alzheimer disease and dementia, but remain underrepresented in clinical research studies. Objective: To synthesize the current evidence on strategies to recruit and retain racial/ethnic minorities in Alzheimer disease and dementia clinical research. Methods: We conducted a systematic review by searching CINAHL, EMBASE, MEDLINE, PsycINFO, and Scopus. We included studies that met four criteria: (1) included a racial/ethnic minority group (African American, Latino, Asian, American Indian or Alaska Native, and Native Hawaiian or Other Pacific Islander); (2) implemented a recruitment or retention strategy for Alzheimer disease or dementia clinical research; (3) conducted within the U.S.; and (4) published in a peer-reviewed journal. Results: Of the 19 included studies, 14 (73.7%) implemented recruitment strategies and 5 (26.3%) implemented both recruitment and retention strategies. Fifteen studies (78.9%) focused on African Americans, two (10.6%) on both African Americans and Latinos, and two (10.5%) on Asians. All the articles were rated weak in the study quality. Four major themes were identified for the recruitment strategies: community outreach (94.7%), advertisement (57.9%), collaboration with health care providers (42.1%), and referral (21.1%). Three major themes were identified for the retention strategies: follow-up communication (15.8%), maintain community relationship (15.8%), and convenience (10.5%). Conclusion: Our findings highlight several promising recruitment and retention strategies that investigators should prioritize when allocating limited resources, however, additional well-designed studies are needed. By recruiting and retaining more racial/ethnic minorities in Alzheimer disease and dementia research, investigators may better understand the heterogeneity of disease progression among marginalized groups. PROSPERO registration #CRD42018081979.

Original languageEnglish (US)
Pages (from-to)458-471
Number of pages14
JournalCurrent Alzheimer Research
Volume16
Issue number5
DOIs
StatePublished - 2019
Externally publishedYes

All Science Journal Classification (ASJC) codes

  • Neurology
  • Clinical Neurology

Keywords

  • Alzheimer disease
  • Dementia
  • Ethnicity
  • Minority
  • Race
  • Recruitment
  • Retention
  • Systematic review

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