Evidence map›Paper›PMID 42375689›Full record

ReviewKidney medicine2026

A Scoping Review of Toolkits Addressing Ethical Issues in Health Registry and Clinical Research Enrollment Among African Americans With CKD.

Henry Asante Antwi, Adaeze Aroh, Deidra C Crews, Rodney Elliot, Nicole Huillca, C Daniel Mullins, Mehar Sandhu, Abdou Simon Senghor

Abstract readReview
In one paragraph

Review in Kidney medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Henry Asante AntwiDepartment of Practice, Sciences and Health Outcome Research, UMB, School of Pharmacy, Baltimore, MD.
Adaeze ArohDepartment of Public Health, Slippery Rock University of Pennsylvania, Slippery Rock, PA.
Deidra C CrewsDivision of Nephrology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.
Rodney ElliotDepartment of Practice, Sciences and Health Outcome Research, UMB, School of Pharmacy, Baltimore, MD.
Nicole HuillcaDepartment of Public Health, University of Maryland, College Park, MD.
C Daniel MullinsDepartment of Practice, Sciences and Health Outcome Research, UMB, School of Pharmacy, Baltimore, MD.
Mehar SandhuDepartment of Public Health, University of Maryland, College Park, MD.
Abdou Simon SenghorDepartment of Practice, Sciences and Health Outcome Research, UMB, School of Pharmacy, Baltimore, MD.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Chronic kidney disease (CKD) disproportionately affects African Americans, yet they remain underrepresented in health registries and clinical research enrollment. This scoping review maps and describes existing toolkits designed to address the ethical challenges that contribute to this disparity. We conducted a scoping review following the Joanna Briggs Institute methodology. We systematically searched Ovid MEDLINE, EMBASE, Scopus, and Cochrane Central for English-language studies (2000-2024) describing tools, strategies, or frameworks to improve the ethical recruitment and retention of African American patients in CKD health registries and clinical research. Of 149 records screened, 14 US-based studies met inclusion criteria. We identified several toolkit strategies: community engagement and educational materials (eg, for APOL1 testing), educational programs (eg, for living donor transplantation), participant experience surveys, virtual recruitment tools, and enhanced genetic testing panels. Although these toolkits aimed to mitigate challenges like mistrust and complex informed consent, significant gaps in design, evaluation, and scalability were identified. Most toolkits were not rigorously evaluated for effectiveness, were often context-specific (eg, limited to transplantation), and rarely addressed structural drivers of inequity. Few provided scalable, culturally tailored solutions for the digital divide or offered sustainable models for community partnership. Although several promising toolkits exist to address ethical challenges in CKD research with African Americans, they remain nascent. Future work must focus on developing rigorously evaluated, scalable, and codeveloped toolkits that move beyond describing barriers to providing actionable, ethical solutions for inclusive registry enrollment and research participation.

Indexed as

African AmericanChronic kidney diseaseclinical research ethicscommunity engagementhealth disparitieshealth registriesparticipationtoolkit

Identifiers

PMID42375689
PMCPMC13312113

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.