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Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review
Gilmore-Bykovskyi AL, Jin Y, Gleason C, Flowers-Benton S, Block LM, Dilworth-Anderson P, Barnes LL, Shah MN et al.. Alzheimer's & dementia (New York, N. Y.), 2019-11-19
Topic: Health services, long-term care and technology
Introduction Alzheimer's disease and related dementias (ADRD) disproportionately impact racial and ethnic minority and socioeconomically disadvantaged adults. Yet, these populations are significantly underrepresented in research. Methods We systematically reviewed the literature for published reports describing recruitment and retention of individuals from underrepresented backgrounds in ADRD research or underrepresented participants' perspectives regarding ADRD research participation. Relevant evidence was synthesized and evaluated for quality. Results We identified 22 eligible studies. Seven studies focused on recruitment/retention approaches, all of which included multifaceted efforts and at least one community outreach component. There was considerable heterogeneity in approaches used, specific activities and strategies, outcome measurement, and conclusions regarding effectiveness. Despite limited use of prospective evaluation strategies, most authors reported improvements in diverse representation in ADRD cohorts. Studies evaluating participant views focused largely on predetermined explanations of participation including attitudes, barriers/facilitators, education, trust, and religiosity. Across all studies, the strength of evidence was low. Discussion Overall, the quantity and quality of available evidence to inform best practices in recruitment, retention, and inclusion of underrepresented populations in ADRD research are low. Further efforts to systematically evaluate the success of existing and emergent approaches will require improved methodological standards and uniform measures for evaluating recruitment, participation, and inclusivity.
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APA 7th
Gilmore-Bykovskyi, A. L., Jin, Y., Gleason, C., Flowers-Benton, S., Block, L. M., Dilworth-Anderson, P., et al. (2019). Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review. Alzheimer's & dementia (New York, N. Y.). https://doi.org/10.1016/j.trci.2019.09.018
Vancouver
Gilmore-Bykovskyi AL, Jin Y, Gleason C, Flowers-Benton S, Block LM, Dilworth-Anderson P, et al. Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review. Alzheimer's & dementia (New York, N. Y.). 2019. doi:10.1016/j.trci.2019.09.018. PMID: 31921966.
BibTeX
@article{gilmorebykovskyi2019-31921966,
author = {Gilmore-Bykovskyi, A. L. and Jin, Y. and Gleason, C. and Flowers-Benton, S. and Block, L. M. and Dilworth-Anderson, P. and Barnes, L. L. and Shah, M. N. and others},
title = {{Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review}},
journal = {Alzheimer's \& dementia (New York, N. Y.)},
year = {2019},
doi = {10.1016/j.trci.2019.09.018},
pmid = {31921966},
url = {https://doi.org/10.1016/j.trci.2019.09.018}
}
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Key findings
- Yet, these populations are significantly underrepresented in research.
- Results We identified 22 eligible studies.
- Discussion Overall, the quantity and quality of available evidence to inform best practices in recruitment, retention, and inclusion of underrepresented populations in ADRD research are low.
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Study details
- Evidence strengthLow
How this study scored 45/100
Published in a leading specialty journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 26 of the 58 points we could judge it on, which is 45 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 9 / 10 | Tier 2 — leading specialty journal (Alzheimer's & dementia (New York, N. Y.)) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 2 / 5 | 2019 — within 10 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 31921966) |
| Free to read | 2 / 2 | Free to read |
| Points | 26 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 26 of the 58 points we could judge it on is 45 out of 100. |
| Total | 45 / 100 | — |
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