Recruitment and retention strategies for minority or poor clinical research participants: lessons from the Healthy Aging in Neighborhoods of Diversity across the Life Span study.
paper
Cited
Public
- Authors
- Ejiogu, Ngozi; Norbeck, Jennifer H; Mason, Marc A; Cromwell, Bridget C; Zonderman, Alan B; Evans, Michele K
- Year
- 2011
- Journal
- The Gerontologist
- PMID
- 21565817
- DOI
- 10.1093/geront/gnr027
- PMCID
- PMC3092978
PURPOSE OF THE STUDY: Investigating health disparities requires studies designed to recruit and retain racially and socioeconomically diverse cohorts. It is critical to address the barriers that disproportionately affect participation in clinical research by minorities and the socioeconomically disadvantaged. This study sought to identify and rectify these barriers to recruit and retain a biracial (African American and non-Hispanic White) and socioeconomically diverse cohort for a longitudinal study. DESIGN AND METHOD: The Healthy Aging in Neighborhoods of Diversity across the Life Span study is a 20-year longitudinal examination of how race and socioeconomic status influence the development of age-related health disparities. One goal was to create a multifactorial recruitment and retention strategy. The recruitment paradigm targeted known barriers and identified those unique to the study's urban environment. The retention paradigm mirrored the recruitment plan but was based on specifically developed approaches. RESULTS: This cohort recruitment required attention to developing community partnerships, designing the research study to meet the study hypotheses and to provide benefit to participants, providing a safe community-based site for the research and creating didactics to develop staff cultural proficiency. These efforts facilitated study implementation and enhanced recruitment resulting in accrual of a biracial and socioeconomically diverse cohort of 3,722 participants. IMPLICATIONS: Recruiting and retaining minority or poor research participants is challenging but possible. The essential facets include clear communication of the research hypothesis, focus on providing a direct benefit for participants, and selection of a hypothesis that is directly relevant to the community studied.
Domain 1βIndividual barriers.
Domain 2βCommunity barriers.
Domain 3βResearcher and scientific barriers.
1β20 of 48
Next β
| Name | Type |
|---|---|
| active coping local | phenotype |
| Active participants local | cohort |
| activities of daily living local | phenotype |
| African American | cohort |
| age-associated health disparities local | phenotype |
| alcohol | phenotype |
| Baltimore-based cohort local | cohort |
| Baltimore City local | cohort |
| Baltimore City Council members local | cohort |
| Baltimore Police Department local | cohort |
| biracial cohort local | cohort |
| blood | drug |
| body composition | phenotype |
| bone mineral density | phenotype |
| Chronic health conditions | phenotype |
| cognition | phenotype |
| coping | phenotype |
| Coronary Artery Risk Development in Young Adults | cohort |
| Criminal justice system local | cohort |
| demographics | phenotype |
| dental health local | phenotype |
| discrimination | phenotype |
| disease burden | phenotype |
| drug dependence | phenotype |
| Eligible participants local | cohort |
| ethnic identity local | phenotype |
| Forest Park local | cohort |
| Government officials local | cohort |
| government sponsored compensated care local | drug |
| grip strength local | phenotype |
| Halfway houses local | cohort |
| HANDLS local | cohort |
| HANDLS study local | cohort |
| Health disparities | phenotype |
| health insurance | phenotype |
| Health Status Decline local | phenotype |
| high-SES cohort local | cohort |
| Home detention monitoring system local | cohort |
| household composition | phenotype |
| illicit drug use | phenotype |
| income | phenotype |
| interim health status changes local | phenotype |
| intima-media thickness | phenotype |
| inventory local | drug |
| Jackson Heart Study | cohort |
| kidney function | phenotype |
| likelihood of continuing participation local | phenotype |
| Limited transportation local | phenotype |
| lower extremity function local | phenotype |
| low-SES African American males local | cohort |
| low-SES African Americans local | cohort |
| low-SES cohort local | cohort |
| low-SES cohorts local | cohort |
| Maryland's Senators local | cohort |
| minority aging local | phenotype |
| minority populations local | cohort |
| Missed MRV appointments local | phenotype |
| Mistrust of the government and medical research local | phenotype |
| MRV local | drug |
| MRV 1 local | cohort |
| MRV 2 local | cohort |
| MRV 3 local | cohort |
| MRVs local | drug |
| National Health and Nutrition Examination Survey local | cohort |
| neighborhood characteristics local | phenotype |
| neurodegenerative disease | phenotype |
| nutrition | phenotype |
| participants | cohort |
| physical functioning | phenotype |
| Physical Limitation local | phenotype |
| psychiatric screening local | phenotype |
| psychosocial inventories local | phenotype |
| pulse wave velocity | phenotype |
| religiosity | phenotype |
| Reservoir Hill local | cohort |
| Retention | phenotype |
| Revised NEO Personality Inventory local | phenotype |
| severe impairment local | phenotype |
| social support | phenotype |
| South Baltimore local | cohort |
| State Senators local | cohort |
| study acceptability local | phenotype |
| study cohort | cohort |
| subjective well-being | phenotype |
| telephone assessment tool local | drug |
| transient and vulnerable population local | cohort |
| urban adults local | cohort |
| urban residents local | cohort |
| urine | drug |
| usual source of care local | phenotype |
| utilization of care local | phenotype |
| Wave 1 Community Advisory Boards local | cohort |
| wave 2 | cohort |
| Wave 2 Interim Follow-up Study local | cohort |
| whites | cohort |
| working poor local | cohort |
| young adults | cohort |
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| Title | Year | PMID |
|---|---|---|
| Post-GWAS in Psychiatric Genetics: A Developmental Perspective on the "Other" Next Steps. | 2018 | 29227573 |
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| Leiomyoma therapeutic options: is it now prime time for stratified medicine? | Bradley LD et al. | β | 2016 | β |
| Levels of Participants Satisfaction with Initial Contact and Examination Visit: The Hispanic Community Health Study/Study of Latinos (HCHS/SOL). | Talavera AC et al. | β | 2016 | β |
| Moderators and mediators of the relationship between receiving versus being denied a pregnancy termination and subsequent binge drinking. | Roberts SC et al. | β | 2016 | β |
| Multiple sclerosis in First Nations Canadians: A pilot comparison study. | Marrie RA et al. | β | 2016 | β |
| Recruiting Diverse Smokers: Enrollment Yields and Cost. | Brodar KE et al. | β | 2016 | β |
| The influence of caregivers and behavioral and psychological symptoms on nursing home placement of persons with Alzheimer's disease: A matched case-control study. | Porter CN et al. | β | 2016 | β |
| Using Citizen Scientists to Gather, Analyze, and Disseminate Information About Neighborhood Features That Affect Active Living. | Winter SJ et al. | β | 2016 | β |
| What does caring mean to nursing and social work students? | Bagdonaite-Stelmokiene R et al. | β | 2016 | β |
| A Multipronged, Adaptive Approach for the Recruitment of Diverse Community-Residing Elders with Memory Impairment: The MIND at Home Experience. | Samus QM et al. | β | 2015 | β |
| Association between education and quality of diabetes care in Switzerland. | Flatz A et al. | β | 2015 | β |
| Culturally Competent Strategies for Recruitment and Retention of African American Populations into Clinical Trials. | Otado J et al. | β | 2015 | β |
| Effect of abortion vs. carrying to term on a woman's relationship with the man involved in the pregnancy. | Mauldon J et al. | β | 2015 | β |
| It Could Be a Pearl to You: Exploring Recruitment and Retention of the Program to Encourage Active, Rewarding Lives (PEARLS) With Hard-to-Reach Populations. | Steinman L et al. | β | 2015 | β |
| Knowledge and attitudes regarding clinical trials and willingness to participate among prostate cancer patients. | Kaplan CP et al. | β | 2015 | β |
| Participant Retention in a Longitudinal National Telephone Survey of African American Men and Women. | Holt CL et al. | β | 2015 | β |
| Receiving Versus Being Denied a Pregnancy Termination and Subsequent Alcohol Use: A Longitudinal Study. | Roberts SC et al. | β | 2015 | β |
| Results of a community translation of the "Women Take PRIDE" heart disease self-management program. | Gallant MP et al. | β | 2015 | β |
| Strategies for research recruitment and retention of older adults of racial and ethnic minorities. | McDougall GJ et al. | β | 2015 | β |
| Strategies to Build Trust and Recruit African American and Latino Community Residents for Health Research: A Cohort Study. | SankarΓ© IC et al. | β | 2015 | β |
| The effect of abortion on having and achieving aspirational one-year plans. | Upadhyay UD et al. | β | 2015 | β |
| African American women's perceptions and attitudes regarding participation in medical research: the Mayo Clinic/The Links, Incorporated partnership. | Brewer LC et al. | β | 2014 | β |
| A qualitative exploration of fishing and fish consumption in the Gullah/Geechee culture. | Ellis JH et al. | β | 2014 | β |
| Capturing the stories behind the numbers: the Auckland Regional Community Stroke Study (ARCOS IV), a qualitative study. | Rutherford SJ et al. | β | 2014 | β |
| Improving retention of very old participants in longitudinal research: experiences from the Newcastle 85+ study. | Davies K et al. | β | 2014 | β |
| Individually-tailored support for ethnically-diverse caregivers: enhancing our understanding of what is needed and what works. | Rosenthal Gelman C et al. | β | 2014 | β |
| Receiving versus being denied an abortion and subsequent drug use. | Roberts SCM et al. | β | 2014 | β |
| Strategies to enhance participant recruitment and retention in research involving a community-based population. | McCullagh MC et al. | β | 2014 | β |
| The influence of health disparities on targeting cancer prevention efforts. | Zonderman AB et al. | β | 2014 | β |
| The role of intimate partners in women's reasons for seeking abortion. | Chibber KS et al. | β | 2014 | β |
| Challenges and success of recruiting and retention for a culturally tailored diabetes prevention program for adults of Mexican descent. | Vincent D et al. | β | 2013 | β |
| Characteristics of women lost to follow-up in cardiovascular community health interventions: findings from the Sister to Sister campaign. | Naderi S et al. | β | 2013 | β |
| Characterizing researchers by strategies used for retaining minority participants: results of a national survey. | Butler J et al. | β | 2013 | β |
| Participation and retention of youth with perinatal HIV infection in mental health research studies: the IMPAACT P1055 psychiatric comorbidity study. | Williams PL et al. | β | 2013 | β |
| Recruitment and Retention for Community-Based eHealth Interventions with Populations of Low Socioeconomic Position: Strategies and Challenges. | Nagler RH et al. | β | 2013 | β |
| Recruitment of black subjects for a natural history study of intracerebral hemorrhage. | Edwards DF et al. | β | 2013 | β |
| ResearchTracking: Monitoring gender and ethnic minority recruitment and retention in cancer symptom studies. | Huang HY et al. | β | 2013 | β |
| Under-representation of minority ethnic groups in research--call for action. | Redwood S et al. | β | 2013 | β |
| Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study. | Sanderson SC et al. | β | 2013 | β |
| A model for the design and implementation of a participant recruitment registry for clinical studies of older adults. | Dowling NM et al. | β | 2012 | β |
| A weight-loss intervention program designed for Mexican-American women: cultural adaptations and results. | Lindberg NM et al. | β | 2012 | β |
| "Communities" in community engagement: lessons learned from autism research in South Korea and South Africa. | Grinker RR et al. | β | 2012 | β |
| Harnessing the power of crowds: crowdsourcing as a novel research method for evaluation of acne treatments. | Armstrong AW et al. | β | 2012 | β |
| Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings. | Riden HE et al. | β | 2012 | β |
| Multisite recruitment and data collection among older adults: exploring methods to conserve human and financial resources. | McCarthy VL et al. | β | 2012 | β |
| Recruitment and enrollment of caregivers for a lifestyle physical activity clinical trial. | Etkin CD et al. | β | 2012 | β |
| Recruitment of Hispanics into an observational study of chronic kidney disease: the Hispanic Chronic Renal Insufficiency Cohort Study experience. | Lora CM et al. | β | 2012 | β |
| 2011 Alzheimer's disease facts and figures. | β | β | 2011 | β |
| Introduction to the science of recruitment and retention among ethnically diverse populations. | Dilworth-Anderson P | β | 2011 | β |