Asian Cohort for Alzheimer&apos;s Disease (ACAD) pilot study on genetic and non‐genetic risk factors for Alzheimer&apos;s disease among Asian Americans and Canadians

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Abstract

INTRODUCTION

Clinical research in Alzheimer's disease (AD) lacks cohort diversity despite being a global health crisis. The Asian Cohort for Alzheimer's Disease (ACAD) was formed to address underrepresentation of Asians in research, and limited understanding of how genetics and non‐genetic/lifestyle factors impact this multi‐ethnic population.

METHODS

The ACAD started fully recruiting in October 2021 with one central coordination site, eight recruitment sites, and two analysis sites. We developed a comprehensive study protocol for outreach and recruitment, an extensive data collection packet, and a centralized data management system, in English, Chinese, Korean, and Vietnamese.

RESULTS

ACAD has recruited 606 participants with an additional 900 expressing interest in enrollment since program inception.

DISCUSSION

ACAD's traction indicates the feasibility of recruiting Asians for clinical research to enhance understanding of AD risk factors. ACAD will recruit > 5000 participants to identify genetic and non‐genetic/lifestyle AD risk factors, establish blood biomarker levels for AD diagnosis, and facilitate clinical trial readiness.

HIGHLIGHTS

The Asian Cohort for Alzheimer's Disease (ACAD) promotes awareness of under‐investment in clinical research for Asians.
We are recruiting Asian Americans and Canadians for novel insights into Alzheimer's disease.
We describe culturally appropriate recruitment strategies and data collection protocol.
ACAD addresses challenges of recruitment from heterogeneous Asian subcommunities.
We aim to implement a successful recruitment program that enrolls across three Asian subcommunities.

Related collections

Most cited references 54

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Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Paul A Harris, Robert Taylor, Robert Thielke … (2009)

Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.

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The REDCap consortium: Building an international community of software platform partners

Paul Harris, Robert Taylor, Brenda Minor … (2019)

The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.

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New insights into the genetic etiology of Alzheimer’s disease and related dementias

Celine Bellenguez, Fahri Küçükali, Iris Jansen … (2022)

Characterization of the genetic landscape of Alzheimer’s disease (AD) and related dementias (ADD) provides a unique opportunity for a better understanding of the associated pathophysiological processes. We performed a two-stage genome-wide association study totaling 111,326 clinically diagnosed/‘proxy’ AD cases and 677,663 controls. We found 75 risk loci, of which 42 were new at the time of analysis. Pathway enrichment analyses confirmed the involvement of amyloid/tau pathways and highlighted microglia implication. Gene prioritization in the new loci identified 31 genes that were suggestive of new genetically associated processes, including the tumor necrosis factor alpha pathway through the linear ubiquitin chain assembly complex. We also built a new genetic risk score associated with the risk of future AD/dementia or progression from mild cognitive impairment to AD/dementia. The improvement in prediction led to a 1.6- to 1.9-fold increase in AD risk from the lowest to the highest decile, in addition to effects of age and the APOE ε4 allele. Meta-analysis of genome-wide association studies on Alzheimer’s disease and related dementias identifies new loci and enables generation of a new genetic risk score associated with the risk of future Alzheimer’s disease and dementia.

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Author and article information

Contributors

Li‐San Wang:

ORCID: https://orcid.org/0000-0002-3684-0031

lswang@pennmedicine.upenn.edu

Journal

Journal ID (nlm-ta): Alzheimers Dement

Journal ID (iso-abbrev): Alzheimers Dement

Journal ID (doi): 10.1002/(ISSN)1552-5279

Journal ID (publisher-id): ALZ

Title: Alzheimer's & Dementia

Publisher: John Wiley and Sons Inc. (Hoboken )

ISSN (Print): 1552-5260

ISSN (Electronic): 1552-5279

Publication date (Electronic): 12 January 2024

Publication date Collection: March 2024

Volume: 20

Issue: 3 ( doiID: 10.1002/alz.v20.3 )

Pages: 2058-2071

Affiliations

[ ¹ ] Penn Neurodegeneration Genomics Center Department of Pathology Perelman School of Medicine University of Pennsylvania Philadelphia Pennsylvania USA

[ ² ] The Leonard Davis Institute of Health Economics University of Pennsylvania Philadelphia Pennsylvania USA

[ ³ ] Brain Health and Imaging Center and Geriatric Mental Health Services Centre for Addiction and Mental Health Toronto Ontario Canada

[ ⁴ ] Department of Pharmacology and Toxicology University of Toronto Toronto Ontario Canada

[ ⁵ ] Memory and Aging Center Department of Neurology Weill Institute for Neurosciences University of California, San Francisco San Francisco California USA

[ ⁶ ] Global Brain Health Institute University of California, San Francisco San Francisco California USA

[ ⁷ ] Alzheimer's Disease Research Center Department of Psychiatry Icahn School of Medicine at Mount Sinai New York New York USA

[ ⁸ ] Department of Neurology Columbia University Medical Center New York New York USA

[ ⁹ ] Department of Radiology and Biomedical Imaging University of California, San Francisco San Francisco California USA

[ ¹⁰ ] Gertrude H. Sergievsky Center Taub Institute of Aging Brain and Department of Neurology at Columbia University New York New York USA

[ ¹¹ ] Englewood Health Englewood New Jersey USA

[ ¹² ] Department of Neurology Rutgers New Jersey Medical School Newark New Jersey USA

[ ¹³ ] Center for Alzheimer Research and Treatment Department of Neurology Brigham and Women's Hospital Boston Massachusetts USA

[ ¹⁴ ] Harvard Medical School Boston Massachusetts USA

[ ¹⁵ ] Broad Institute of MIT and Harvard Cambridge Massachusetts USA

[ ¹⁶ ] Department of Community Health Systems University of California San Francisco School of Nursing San Francisco California USA

[ ¹⁷ ] Alzheimer's Disease Cooperative Study University of California, San Diego La Jolla California USA

[ ¹⁸ ] Department of Medical and Molecular Genetics Indiana University School of Medicine Indianapolis Indiana USA

[ ¹⁹ ] Geriatric Mental Health Services, Centre for Addiction and Mental Health Toronto Ontario Canada

[ ²⁰ ] University of Southern California Los Angeles California USA

[ ²¹ ] Stanford Alzheimer's Disease Research Center Stanford California USA

[ ²² ] College of Nursing Graduate Program in System Health Science and Engineering Ewha Womans University Seoul Republic of Korea

[ ²³ ] Division of Neurology University of British Columbia Vancouver British Columbia Canada

[ ²⁴ ] Department of Neurology Chosun University Hospital, Dong‐gu Gwangju Republic of Korea

[ ²⁵ ] Department of Child Development and Family Studies College of Human Ecology Seoul National University Jongno‐gu Seoul Republic of Korea

[ ²⁶ ] Biomedical Science, College of Natural Sciences Chosun University Gwanak‐gu Seoul Republic of Korea

[ ²⁷ ] Department of Medicine (Biomedical Genetics) Boston University School of Medicine Boston Massachusetts USA

[ ²⁸ ] Department of Biostatistics Epidemiology and Informatics Perelman School of Medicine University of Pennsylvania Philadelphia Pennsylvania USA

[ ²⁹ ] Department of Neurology Keck School of Medicine at University of Southern California Los Angeles California USA

[ ³⁰ ] Department of Medicine University of California at San Diego La Jolla California USA

[ ³¹ ] Premedical Science, College of Medicine Chosun University, Dong‐gu Gwangju Republic of Korea

[ ³² ] Department of Population & Quantitative Health Sciences School of Medicine Case Western Reserve University Cleveland Ohio USA

[ ³³ ] Tanz Centre for Research in Neurodegenerative Diseases University of Toronto Toronto Ontario Canada

[ ³⁴ ] Department of Biomedical Data Science Stanford University School of Medicine Stanford California USA

[ ³⁵ ] Southern California Eye Institute, CHA Hollywood Presbyterian Medical Center Los Angeles California USA

[ ³⁶ ] Department of Neurology Rancho Los Amigos National Rehabilitation Center Downey California USA

[ ³⁷ ] Department of Ophthalmology Keck School of Medicine at University of Southern California Los Angeles California USA

[ ³⁸ ] Department of Neurology and the Taub Institute for Research on Alzheimer's Disease and the Aging Brain Columbia University New York New York USA

[ ³⁹ ] Department of Anatomy and Neurobiology Slone Epidemiology Center Boston University Chobanian & Avedisian School of Medicine Boston Massachusetts USA

[ ⁴⁰ ] Department of Epidemiology Boston University School of Public Health Boston Massachusetts USA

[ ⁴¹ ] Department of Neurology Indiana University School of Medicine Indianapolis Indiana USA

[ ⁴² ] Department of Epidemiology and Population Health Stanford University Stanford California USA

[ ⁴³ ] Department of Neurology & Neurological Sciences Stanford University Stanford California USA

[ ⁴⁴ ] Department of Epidemiology University of Washington Seattle Washington USA

[ ⁴⁵ ] Department of Neurosciences University of California San Diego La Jolla California USA

[ ⁴⁶ ] Rory Meyers College of Nursing New York University New York New York USA

[ ⁴⁷ ] Department of Neurology and the Taub Institute for Research on Alzheimer's Disease and the Aging Brain Columbia University, Vagelos College of Physicians and Surgeons New York New York USA

[ ⁴⁸ ] Department of Ophthalmology Boston University School of Medicine Boston Massachusetts USA

[ ⁴⁹ ] Department of Biostatistics Boston University School of Public Health Boston Massachusetts USA

[ ⁵⁰ ] Asian American Research Center on Health (ARCH) University of California San Francisco School of Nursing San Francisco California USA

[ ⁵¹ ] Alector Inc. South San Francisco California USA

Author notes

[*] [* ] Correspondence

Li‐San Wang, Penn Neurodegeneration Genomics Center, Department of Pathology, Perelman School of Medicine, University of Pennsylvania, 3700 Hamilton Walk, Richards Building D102, Philadelphia, PA 19104, USA.

Email: lswang@ 123456pennmedicine.upenn.edu

Author information

Li‐San Wang https://orcid.org/0000-0002-3684-0031

Article

Publisher ID: ALZ13611

DOI: 10.1002/alz.13611

PMC ID: 10984480

PubMed ID: 38215053

SO-VID: f02a1475-65ea-4d3a-a3ac-eae74b0999f2

License:

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

Date revision received : 25 September 2023

Date received : 17 May 2023

Date accepted : 27 November 2023

Page count

Figures: 3, Tables: 5, Pages: 14, Words: 8300

Funding

Funded by: National Institute on Aging , doi 10.13039/100000049;

Award ID: R56 AG069130

Award ID: U19AG079774

Award ID: U24AG021886

Award ID: R24AG063718

Award ID: R01AG083926

Award ID: R21AG077649

Award ID: U19AG068753

Award ID: R01AG080469

Award ID: P30AG062422

Award ID: R21AG068757

Award ID: K23AG062750

Award ID: UH2AG083258

Award ID: R61AG083582

Award ID: R01AG083840

Funded by: Centre for Addiction and Mental Health Discovery Fund

Award ID: 3000028

Funded by: National Eye Institute , doi 10.13039/100000053;

Award ID: U10EY017337

Funded by: Korea Brain Research Institute , doi 10.13039/100018749;

Award ID: 23‐BR‐03‐05

Funded by: Alzheimer's Association , doi 10.13039/100000957;

Award ID: AACSFD‐22‐972143

Award ID: ALZ‐NAN‐22‐928181

Custom metadata

source-schema-version-number 2.0

cover-date March 2024

details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_JATSPMC version:6.4.0 mode:remove_FC converted:01.04.2024

Keywords: alzheimer's disease,asian,biosamples,community‐based participatory research,dementia,environmental,genetics

Data availability:

Keywords: alzheimer's disease, asian, biosamples, community‐based participatory research, dementia, environmental, genetics

Asian Cohort for Alzheimer's Disease (ACAD) pilot study on genetic and non‐genetic risk factors for Alzheimer's disease among Asian Americans and Canadians

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Abstract

INTRODUCTION

METHODS

RESULTS

DISCUSSION

HIGHLIGHTS

Related collections

Alternative approaches to Alzheimer's Disease

Most cited references 54

Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

The REDCap consortium: Building an international community of software platform partners

New insights into the genetic etiology of Alzheimer’s disease and related dementias

Author and article information

Contributors

Journal

Affiliations

Author notes

Author information

Article

History

Page count

Funding

Categories

Custom metadata

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