12
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Accelerating diversity in Alzheimer's disease research by partnering with a community advisory board

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Introduction

          Community advisory boards (CABs) and researcher partnerships present a promising opportunity to accelerate enrollment of underrepresented groups (URGs). We outline the framework for how the CAB and researchers at the Indiana Alzheimer's Disease Research Center (IADRC) partnered to accelerate URG participation in AD neuroimaging research.

          Methods

          CAB and the IADRC researchers partnered to increase the CAB's impact on URG study enrollment through community and research interactions. Community interactions included the CAB collaboratively building a network of URG focused community organizations and collaborating with those URG‐focused organizations to host IADRC outreach and recruitment events. Research interactions included direct impact (CAB members referring themselves or close contacts as participants) and strategic impact, mainly by the CAB working with researchers to develop and refine URG focused outreach and recruitment strategies for IADRC and affiliated studies to increase URG representation. We created a database infrastructure to measure how these interactions impacted URG study enrollment.

          Results

          Out of the 354 URG research referrals made to the IADRC between October 2019 and December 2022, 267 referrals were directly referred by the CAB ( N = 36) or from community events in which CAB members organized and/or volunteered at ( N = 231). Out of these 267 referrals, 34 were enrolled in IADRC and 2 were enrolled in Indiana University Longitudinal Early Onset AD Study (IU LEADS). Of note, both studies require the prospective participants to be willing to do MRI and PET scans. As of December 2022, 30 out of the 34 enrolled participants have received a consensus diagnosis; the majority were cognitively normal (64.7%), with the remainder having mild cognitive impairment (17.6%) or early‐stage AD (2.9%).

          Discussion

          The IADRC CAB‐researcher partnership had a measurable impact on the enrollment of African American/Black adults in AD neuroimaging studies. Future studies will need to test whether this conceptual model works for other sites and for other URGs.

          Related collections

          Most cited references18

          • Record: found
          • Abstract: found
          • Article: not found

          Community-based participatory research: policy recommendations for promoting a partnership approach in health research.

          Community-based participatory research in public health focuses on social, structural, and physical environmental inequities through active involvement of community members, organizational representatives, and researchers in all aspects of the research process. Partners contribute their expertise to enhance understanding of a given phenomenon and integrate the knowledge gained with action to benefit the community involved. This article presents key principles of community-based participatory research (CBPR), discusses the rationale for its use, and provides a number of policy recommendations at the organizational, community and national levels aimed at advancing the application of CBPR. While the issues addressed here draw primarily upon experiences in the United States, the emphasis throughout this article on the establishment of policies to enhance equity that would serve both to increase the engagement of communities as partners in health research, and to reduce health disparities, has relevant applications in a global context.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: found
            Is Open Access

            Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review

            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.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: found
              Is Open Access

              The AHEAD 3–45 Study: Design of a prevention trial for Alzheimer’s disease

              Introduction: The Alzheimer’s disease (AD) continuum begins with a long asymptomatic or preclinical stage, during which amyloid beta (Aβ) is accumulating for more than a decade prior to widespread cortical tauopathy, neurodegeneration, and manifestation of clinical symptoms. The AHEAD 3–45 Study (BAN2401-G000-303) is testing whether intervention with lecanemab (BAN2401), a humanized immunoglobulin 1 (IgG1) monoclonal antibody that preferentially targets soluble aggregated Aβ, initiated during this asymptomatic stage can slow biomarker changes and/or cognitive decline. The AHEAD 3–45 Study is conducted as a Public-Private Partnership of the Alzheimer’s Clinical Trial Consortium (ACTC), funded by the National Institute on Aging, National Institutes of Health (NIH), and Eisai Inc. Methods: The AHEAD 3–45 Study was launched on July 14, 2020, and consists of two sister trials (A3 and A45) in cognitively unimpaired (CU) individuals ages 55 to 80 with specific dosing regimens tailored to baseline brain amyloid levels on screening positron emission tomography (PET) scans: intermediate amyloid (≈20 to 40 Centiloids) for A3 and elevated amyloid (>40 Centiloids) for A45. Both trials are being conducted under a single protocol, with a shared screening process and common schedule of assessments. A3 is a Phase 2 trial with PET-imaging end points, whereas A45 is a Phase 3 trial with a cognitive composite primary end point. The treatment period is 4 years. The study utilizes innovative approaches to enriching the sample with individuals who have elevated brain amyloid. These include recruiting from the Trial-Ready Cohort for Preclinical and Prodromal Alzheimer’s disease (TRC-PAD), the Australian Dementia Network (ADNeT) Registry, and the Japanese Trial Ready Cohort (J-TRC), as well as incorporation of plasma screening with the C2N mass spectrometry platform to quantitate the Aβ 42/40 ratio (Aβ 42/40), which has been shown previously to reliably identify cognitively normal participants not likely to have elevated brain amyloid levels. A blood sample collected at a brief first visit is utilized to “screen out” individuals who are less likely to have elevated brain amyloid, and to determine the participant’s eligibility to proceed to PET imaging. Eligibility to randomize into the A3 Trial or A45 Trial is based on the screening PET imaging results. Result: The focus of this article is on the innovative design of the study. Discussion: The AHEAD 3–45 Study will test whether with lecanemab (BAN2401) can slow the accumulation of tau and prevent the cognitive decline associated with AD during its preclinical stage. It is specifically targeting both the preclinical and the early preclinical (intermediate amyloid) stages of AD and is the first secondary prevention trial to employ plasma-based biomarkers to accelerate the screening process and potentially substantially reduce the number of screening PET scans.
                Bookmark

                Author and article information

                Contributors
                sophwang@iupui.edu
                Journal
                Alzheimers Dement (N Y)
                Alzheimers Dement (N Y)
                10.1002/(ISSN)2352-8737
                TRC2
                Alzheimer's & Dementia : Translational Research & Clinical Interventions
                John Wiley and Sons Inc. (Hoboken )
                2352-8737
                28 May 2023
                Apr-Jun 2023
                : 9
                : 2 ( doiID: 10.1002/trc2.v9.2 )
                : e12400
                Affiliations
                [ 1 ] Marian University College of Osteopathic Medicine Indianapolis Indiana USA
                [ 2 ] Indiana University Alzheimer's Disease Research Center Community Advisory Board Indiana University School of Medicine Indianapolis Indiana USA
                [ 3 ] Department of Internal General Medicine Indiana University School of Medicine Indianapolis Indiana USA
                [ 4 ] Indiana Alzheimer's Disease Research Center Indiana University School of Medicine Indianapolis Indiana USA
                [ 5 ] VA HSR&D Center for Health Information and Communication Roudebush VA Medical Center Indianapolis Indiana USA
                [ 6 ] Department of Neurology Indiana University School of Medicine Indianapolis Indiana USA
                [ 7 ] Department of Psychiatry Indiana University School of Medicine Indianapolis Indiana USA
                [ 8 ] Department of Radiology Indiana University School of Medicine Indianapolis Indiana USA
                [ 9 ] Department of Biostatistics Indiana University School of Medicine Indianapolis Indiana USA
                Author notes
                [*] [* ] Correspondence

                Sophia Wang, Indiana Alzheimer's Disease Research Center, Indiana University School of Medicine, MS 355 W 16th St, Indianapolis, IN 46202, USA.

                Email: sophwang@ 123456iupui.edu

                Author information
                https://orcid.org/0000-0003-2274-859X
                Article
                TRC212400
                10.1002/trc2.12400
                10225742
                723ad169-46b0-472b-aee7-140d9a954f92
                © 2023 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

                History
                : 18 April 2023
                : 24 February 2023
                : 03 May 2023
                Page count
                Figures: 2, Tables: 0, Pages: 6, Words: 3358
                Funding
                Funded by: NIA , doi 10.13039/100000049;
                Award ID: P30AG072976
                Award ID: P30AG010133
                Award ID: NIA U01 AG057195
                Funded by: Alzheimer's Association , doi 10.13039/100000957;
                Award ID: LDRFP‐21‐818464
                Funded by: NIH , doi 10.13039/100000002;
                Award ID: P30 AG010133
                Award ID: P30 AG072976
                Award ID: R01 AG019771
                Award ID: R01 AG057739
                Award ID: U01 AG024904
                Award ID: R01 LM013463
                Award ID: R01 AG068193
                Award ID: T32 AG071444
                Award ID: U01 AG068057
                Award ID: U01 AG072177
                Categories
                Short Report
                Short Report
                Custom metadata
                2.0
                April‐June 2023
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.2.8 mode:remove_FC converted:29.05.2023

                alzheimer's disease,community advisory boards,community‐engaged research,outreach,recruitment

                Comments

                Comment on this article