ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Successful recruitment and retention of diverse participants in a genomics clinical trial: a good invitation to a great party.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
31 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- Trial
- Effects of Testing and Disclosing Ancestry-Specific Genetic Risk for Kidney Failure on Patients and Health Care Professionals: A Randomized Clinical Trial.JAMA network open · 2022Trial
- Comprehensive examination of the multilevel adverse risk and protective factors for cardiovascular disease among hypertensive African Americans.Journal of clinical hypertension (Greenwich, Conn.) · 2019Trial
- Designing inclusive newborn sequencing research: insights from parents in underrepresented communities.BMC medical genomics · 2026Article
- Article
- Engaging migrants and immigrants in genetics research.Nature genetics · 2025Review
- Characterizing trends in clinical genetic testing: A single-center analysis of EHR data from 1.8 million patients over two decades.American journal of human genetics · 2025Article
- Practical issues in recruiting and retaining Asian American breast cancer survivors in a technology-based intervention study: A discussion paper.Journal of clinical and translational science · 2025Article
- When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research.Genetics in medicine open · 2025Article
- Employing effective recruitment and retention strategies to engage a diverse pediatric population in genomics research.American journal of human genetics · 2024Article
- The BabySeq Project: A clinical trial of genome sequencing in a diverse cohort of infants.American journal of human genetics · 2024Article
- More than Just a Number: Perspectives from Black Male Participants on Community-Based Interventions and Clinical Trials to Address Cardiovascular Health Disparities.International journal of environmental research and public health · 2024Article
- Retention and the Intersection of Structural Inequities in a Breastfeeding Intervention Study.medRxiv : the preprint server for health sciences · 2024Article
- Placing Publics in Public Health Genomics.Public health genomics · 2024Article
- Extending an Antiracism Lens to the Implementation of Precision Public Health Interventions.American journal of public health · 2023Article
- Medical and psychosocial outcomes of state-funded population genomic screening.Clinical genetics · 2023Article
- Committing to genomic answers for all kids: Evaluating inequity in genomic research enrollment.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- Diagnostic yield of genetic screening in a diverse, community-ascertained cohort.Genome medicine · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
purposeAfrican ancestry (AA) individuals are inadequately included in translational genomics research, limiting generalizability of findings and benefits of genomic discoveries for populations already facing disproportionately poor health outcomes. We aimed to determine the impact of stakeholder-engaged strategies on recruitment and retention of AA adult patients into a clinical trial testing them for renal risk variants nearly exclusive to AAs.
methodsOur academic-clinical-community team developed ten key strategies that recognize AAs' barriers and facilitators for participation. Using electronic health records (EHRs), we identified potentially eligible patients. Recruiters reached out through letters, phone calls, and at medical visits.
resultsOf 5481 AA patients reached, 51% were ineligible, 37% enrolled, 4% declined, 7% were undecided when enrollment finished. We retained 93% at 3-month and 88% at 12-month follow-up. Those enrolled are more likely female, seen at community sites, and reached through active strategies, than those who declined. Those retained are more likely female, health-literate, and older. While many patients have low income, low clinician trust, and perceive racism in health care, none of these attributes correlate with retention.
conclusionWith robust stakeholder engagement, recruiters from patients' communities, and active approaches, we successfully recruited and retained AA patients into a genomic clinical trial.
Indexed as
Identifiers
30948857What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.