Browsing by Subject "Underrepresented populations"

Now showing 1 - 4 of 4
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    Increasing participant diversity in AD research: Plans for digital screening, blood testing, and a community-engaged approach in the Alzheimer's Disease Neuroimaging Initiative 4
    (Wiley, 2023) Weiner, Michael W.; Veitch, Dallas P.; Miller, Melanie J.; Aisen, Paul S.; Albala, Bruce; Beckett, Laurel A.; Green, Robert C.; Harvey, Danielle; Jack, Clifford R., Jr.; Jagust, William; Landau, Susan M.; Morris, John C.; Nosheny, Rachel; Okonkwo, Ozioma C.; Perrin, Richard J.; Petersen, Ronald C.; Rivera-Mindt, Monica; Saykin, Andrew J.; Shaw, Leslie M.; Toga, Arthur W.; Tosun, Duygu; Trojanowski, John Q.; Alzheimer's Disease Neuroimaging Initiative; Radiology and Imaging Sciences, School of Medicine
    Introduction: The Alzheimer's Disease Neuroimaging Initiative (ADNI) aims to validate biomarkers for Alzheimer's disease (AD) clinical trials. To improve generalizability, ADNI4 aims to enroll 50-60% of its new participants from underrepresented populations (URPs) using new biofluid and digital technologies. ADNI4 has received funding from the National Institute on Aging beginning September 2022. Methods: ADNI4 will recruit URPs using community-engaged approaches. An online portal will screen 20,000 participants, 4000 of whom (50-60% URPs) will be tested for plasma biomarkers and APOE. From this, 500 new participants will undergo in-clinic assessment joining 500 ADNI3 rollover participants. Remaining participants (∼3500) will undergo longitudinal plasma and digital cognitive testing. ADNI4 will add MRI sequences and new PET tracers. Project 1 will optimize biomarkers in AD clinical trials. Results and discussion: ADNI4 will improve generalizability of results, use remote digital and blood screening, and continue providing longitudinal clinical, biomarker, and autopsy data to investigators.
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    Overview of Alzheimer's Disease Neuroimaging Initiative and future clinical trials
    (Wiley, 2025) Weiner, Michael W.; Kanoria, Shaveta; Miller, Melanie J.; Aisen, Paul S.; Beckett, Laurel A.; Conti, Catherine; Diaz, Adam; Flenniken, Derek; Green, Robert C.; Harvey, Danielle J.; Jack, Clifford R., Jr.; Jagust, William; Lee, Edward B.; Morris, John C.; Nho, Kwangsik; Nosheny, Rachel; Okonkwo, Ozioma C.; Perrin, Richard J.; Petersen, Ronald C.; Rivera-Mindt, Monica; Saykin, Andrew J.; Shaw, Leslie M.; Toga, Arthur W.; Tosun, Duygu; Veitch, Dallas P.; Alzheimer's Disease Neuroimaging Initiative; Radiology and Imaging Sciences, School of Medicine
    The overall goal of the Alzheimer's Disease Neuroimaging Initiative (ADNI) is to optimize and validate biomarkers for clinical trials while sharing all data and biofluid samples with the global scientific community. ADNI has been instrumental in standardizing and validating amyloid beta (Aβ) and tau positron emission tomography (PET) imaging. ADNI data were used for the US Food and Drug Administration (FDA) approval of the Fujirebio and Roche Elecsys cerebrospinal fluid diagnostic tests. Additionally, ADNI provided data for the trials of the FDA-approved treatments aducanumab, lecanemab, and donanemab. More than 6000 scientific papers have been published using ADNI data, reflecting ADNI's promotion of open science and data sharing. Despite its enormous success, ADNI has some limitations, particularly in generalizing its data and findings to the entire US/Canadian population. This introduction provides a historical overview of ADNI and highlights its significant accomplishments and future vision to pioneer "the clinical trial of the future" focusing on demographic inclusivity. HIGHLIGHTS: The Alzheimer's Disease Neuroimaging Initiative (ADNI) introduced a novel model for public-private partnerships and data sharing. It successfully validated amyloid and Tau PET imaging, as well as CSF and plasma biomarkers, for diagnosing Alzheimer's disease. ADNI generated and disseminated vital data for designing AD clinical trials.
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    The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core: A culturally informed, community-engaged research (CI-CER) model to advance brain health equity
    (Wiley, 2024) Rivera Mindt, Mónica; Arentoft, Alyssa; Calcetas, Amanda T.; Guzman, Vanessa A.; Amaza, Hannatu; Ajayi, Adeyinka; Ashford, Miriam T.; Ayo, Omobolanle; Barnes, Lisa L.; Camuy, Alicia; Conti, Catherine; Diaz, Adam; Easter, Bashir; Gonzalez, David J.; Graham Dotson, Yolanda; Hoang, Isabella; Germano, Kaori Kubo; Maestre, Gladys E.; Magaña, Fabiola; Meyer, Oanh L.; Miller, Melanie J.; Nosheny, Rachel; Ta Park, Van M.; Parkins, Shaniya; Renier Thomas, Lisa; Strong, Joe; Talavera, Sandra; Verney, Steven P.; Weisensel, Trinity; Weiner, Michael W.; Okonkwo, Ozioma C.; Alzheimer's Disease Neuroimaging Initiative; Medicine, School of Medicine
    Introduction: The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD-related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence-based, scalable culturally informed, community-engaged research (CI-CER) model and demonstrate its preliminary success in increasing URP enrollment. Methods: URPs include ethnoculturally minoritized, lower education (≤ 12 years), and rural populations. The CI-CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community-Science Partnership Board). Results: As of April 2024, 60% of ADNI-4 new in-clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI-4's ≥ 50% URP representation goal for new enrollees but may not represent final enrollment. Discussion: Findings show a CI-CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity. Highlights: The Alzheimer's Disease Neuroimaging Initiative-4 (ADNI-4) uses a culturally informed, community-engaged research (CI-CER) approach. The CI-CER approach is scalable and sustainable for broad, multisite implementation. ADNI-4 is currently exceeding its inclusion goals for underrepresented populations.
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    Underrepresented Populations in Parkinson's Genetics Research: Current Landscape and Future Directions
    (Wiley, 2022) Schumacher-Schuh, Artur Francisco; Bieger, Andrei; Okunoye, Olaitan; Mok, Kin Ying; Lim, Shen-Yang; Bardien, Soraya; Ahmad-Annuar, Azlina; Santos-Lobato, Bruno Lopes; Zschornack Strelow, Matheus; Salama, Mohamed; Rao, Shilpa C.; Zewde, Yared Zenebe; Dindayal, Saiesha; Azar, Jihan; Kukkle Prashanth, Lingappa; Rajan, Roopa; Noyce, Alastair J.; Okubadejo, Njideka; Rizig, Mie; Lesage, Suzanne; Mata, Ignacio Fernandez; Global Parkinson’s Genetics Program (GP2); Medical and Molecular Genetics, School of Medicine
    Background: Human genetics research lacks diversity; over 80% of genome-wide association studies have been conducted on individuals of European ancestry. In addition to limiting insights regarding disease mechanisms, disproportionate representation can create disparities preventing equitable implementation of personalized medicine. Objective: This systematic review provides an overview of research involving Parkinson's disease (PD) genetics in underrepresented populations (URP) and sets a baseline to measure the future impact of current efforts in those populations. Methods: We searched PubMed and EMBASE until October 2021 using search strings for "PD," "genetics," the main "URP," and and the countries in Latin America, Caribbean, Africa, Asia, and Oceania (excluding Australia and New Zealand). Inclusion criteria were original studies, written in English, reporting genetic results on PD from non-European populations. Two levels of independent reviewers identified and extracted information. Results: We observed imbalances in PD genetic studies among URPs. Asian participants from Greater China were described in the majority of the articles published (57%), but other populations were less well studied; for example, Blacks were represented in just 4.0% of the publications. Also, although idiopathic PD was more studied than monogenic forms of the disease, most studies analyzed a limited number of genetic variants. We identified just nine studies using a genome-wide approach published up to 2021, including URPs. Conclusion: This review provides insight into the significant lack of population diversity in PD research highlighting the immediate need for better representation. The Global Parkinson's Genetics Program (GP2) and similar initiatives aim to impact research in URPs, and the early metrics presented here can be used to measure progress in the field of PD genetics in the future.