Evidence map›Paper›PMID 39120898›Full record

Observational studyJAMA network open2024

A Protocol for the Inclusion of Minoritized Persons in Alzheimer Disease Research From the ADNI3 Diversity Taskforce.

Ozioma C Okonkwo, Monica Rivera Mindt, Miriam T Ashford, Catherine Conti, Joe Strong, Rema Raman, Michael C Donohue, Rachel L Nosheny, Derek Flenniken, Melanie J Miller and 19 more

Abstract readObservational StudyMulticenter Study
In one paragraph

Observational study in JAMA network open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–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

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Staging Alzheimer's disease through amyloid and tau PET.Brain : a journal of neurology · 2026
    Article
  3. Review
  4. The ADNI Administrative Core: Ensuring ADNI's success and informing future AD clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  5. Article
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

29 authors.

Ozioma C OkonkwoDepartment of Medicine and Wisconsin Alzheimer's Disease Research Center, University of Wisconsin School of Medicine and Public Health, Madison.
Monica Rivera MindtDepartment of Psychology, Latin American Latinx Studies Institute, and African and African American Studies, Fordham University, Bronx, New York.
Miriam T AshfordNorthern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Catherine ContiNorthern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Joe StrongDepartment of Medicine and Wisconsin Alzheimer's Disease Research Center, University of Wisconsin School of Medicine and Public Health, Madison.
Rema RamanAlzheimer's Therapeutic Research Institute, University of Southern California, San Diego.
Michael C DonohueAlzheimer's Therapeutic Research Institute, University of Southern California, San Diego.
Rachel L NoshenyVA Advanced Imaging Research Center, San Francisco Veteran's Administration Medical Center, San Francisco, California.
Derek FlennikenNorthern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Melanie J MillerNorthern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Adam DiazNorthern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Annabelle M SotoDepartment of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York.
Beau M AncesDepartment of Neurology, Washington University in Saint Louis, Saint Louis, Missouri.
Maryam R BeigiDepartment of Neurology, David Geffen School of Medicine, University of California, Los Angeles.
P Murali DoraiswamyDepartments of Psychiatry and Medicine, Duke University School of Medicine, Durham, North Carolina.
Ranjan DuaraWein Center for Alzheimer's Disease and Memory Disorders, Mount Sinai Medical Center, Miami Beach, Florida.
Martin R FarlowDepartment of Neurology, Indiana University Health, Indianapolis.
Hillel T GrossmanThe Alzheimer Disease Research Center, Mount Sinai School of Medicine, New York, New York.
Jacobo E MintzerMedical University of South Carolina, Ralph H. Johnson VA Healthcare Center, Charleston.
Christopher ReistMindX Sciences Inc, Indianapolis, Indiana.
Emily J RogalskiDepartment of Neurology, University of Chicago, Chicago, Illinois.
Marwan N SabbaghAlzheimer's and Memory Disorders Division, Department of Neurology, Barrow Neurological Institute, Phoenix, Arizona.
Stephen SallowayMemory and Aging Program, Butler Hospital, Alpert Medical School, Brown University, Providence, Rhode Island.
Lon S SchneiderDepartment of Psychiatry and Behavioral Sciences, Department of Neurology, Alzheimer's Disease Research Center, Keck School of Medicine of USC, Los Angeles, California.
Raj C ShahDepartment of Family and Preventive Medicine and the Rush Alzheimer's Disease Center, Rush University Medical Center, Chicago, Illinois.
Ronald C PetersenAlzheimer's Disease Research Center, Mayo Clinic College of Medicine, Rochester, Minnesota.
Paul S AisenAlzheimer's Therapeutic Research Institute, University of Southern California, San Diego.
Michael W WeinerNorthern California Institute for Research and Education, Department of Veterans Affairs Medical Center, San Francisco.
Alzheimer’s Disease Neuroimaging Initiative

Funding

Project 1U19AG024904 · NIA · NORTHERN CALIFORNIA INSTITUTE/RES/EDU · PI MONICA G. RIVERA-MINDT · 2016 to 2026
$226.7M
Research Education ComponentP30AG066514 · NIA · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI Margaret Sewell · 2020 to 2026
$31.0M
USCADRC Diversity Supplement PachicanoP30AG066530 · NIA · UNIVERSITY OF SOUTHERN CALIFORNIA · PI HELENA Chang CHUI · 2020 to 2026
$27.8M
NIA NIH HHS P30 AG066514NIA NIH HHS P30 AG066530NIA NIH HHS U19 AG024904
6 · The paper itself

Abstract

Importance: Black or African American (hereinafter, Black) and Hispanic or Latino/a/x (hereinafter, Latinx) adults are disproportionally affected by Alzheimer disease, but most research studies do not enroll adequate numbers of both of these populations. The Alzheimer's Disease Neuroimaging Initiative-3 (ADNI3) launched a diversity taskforce to pilot a multipronged effort to increase the study inclusion of Black and Latinx older adults. Objective: To describe and evaluate the culturally informed and community-engaged inclusion efforts to increase the screening and enrollment of Black and Latinx older adults in ADNI3. Design, Setting, and Participants: This cross-sectional study used baseline data from a longitudinal, multisite, observational study conducted from January 15, 2021, to July 12, 2022, with no follow-up. The study was conducted at 13 ADNI3 sites in the US. Participants included individuals aged 55 to 90 years without cognitive impairment and those with mild cognitive impairment or Alzheimer disease. Exposures: Efforts included (1) launch of an external advisory board, (2) changes to the study protocol, (3) updates to the digital prescreener, (4) selection and deployment of 13 community-engaged research study sites, (5) development and deployment of local and centralized outreach efforts, and (6) development of a community-science partnership board. Main Outcomes and Measures: Screening and enrollment numbers from centralized and local outreach efforts, digital advertisement metrics, and digital prescreener completion. Results: A total of 91 participants enrolled in the trial via centralized and local outreach efforts, of which 22 (24.2%) identified as Latinx and 55 (60.4%) identified as Black (median [IQR] age, 65.6 [IQR, 61.5-72.5] years; 62 women [68.1%]). This represented a 267.6% increase in the monthly rate of enrollment (before: 1.11 per month; during: 4.08 per month) of underrepresented populations. For the centralized effort, social media advertisements were run between June 1, 2021, and July 31, 2022, which resulted in 2079 completed digital prescreeners, of which 1289 met criteria for subsequent site-level screening. Local efforts were run between June 1, 2021, to July 31, 2022. A total of 151 participants underwent site-level screening (100 from local efforts, 41 from centralized efforts, 10 from other sources). Conclusions and Relevance: In this cross-sectional study of pilot inclusion efforts, a culturally informed, community-engaged approach increased the inclusion of Black and Latinx participants in an Alzheimer disease cohort study.

Indexed as

Alzheimer DiseaseBlack or African AmericanHispanic or LatinoAgedAged, 80 and overCognitive DysfunctionCross-Sectional StudiesFemaleHumansLongitudinal StudiesMaleMiddle AgedPatient SelectionUnited States

Identifiers

PMID39120898
PMCPMC11316236

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.