Genomic stewardship in Alzheimer’s disease: a decade of insights from the NIAGADS platform

Fourteen years ago, Alzheimer's disease (AD) genetics entered an era of exponential data growth, but the infrastructure to support and steward that data had yet to catch up. Large-scale genomic discovery demands more than storage; it requires coordination, ethical rigor, and a platform architecture that transforms raw data into shared knowledge. In response, the National Institute on Aging launched the Genetics of Alzheimer's Disease Data Storage Site (NIAGADS), not simply to house genetic data for AD and AD-related dementias (ADRD), but to enable its responsible reuse. What began in 2012 as a repository has evolved into an integrated system for policy-aligned access, harmonized data production, and broad community engagement. A detailed overview of NIAGADS was recently published as a Perspective in Alzheimer's & Dementia<sup>1</sup>. In this Commentary, we reflect on key lessons from building and operating NIAGADS at national scale, with the goal of informing the next generation of genomic platforms.

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Publication Details

Journal
npj Dementia
Published
2026-03-09
DOI
https://doi.org/10.1038/s44400-026-00065-z
Primary Topic
Genomics and Rare Diseases
Type
article
Field-Weighted Citation Impact
0.00
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article

Genomic stewardship in Alzheimer’s disease: a decade of insights from the NIAGADS platform

Wan‐Ping Lee, Živadin Katanić, Otto Valladares, Andrew Wilk et al.
npj Dementia
Genomics and Rare Diseases
article

Genomic stewardship in Alzheimer’s disease: a decade of insights from the NIAGADS platform

Wan‐Ping Lee, Živadin Katanić, Otto Valladares, Andrew Wilk, Heather Nicaretta, Wei Wang, Heather White, Youli Ren, Maureen Kirsch, Yuk Yee Leung, Amanda Kuzma, Emily Greenfest-Allen, Laura Cantwell, Pavel Kuksa, Gerard D. Schellenberg
article en

Abstract

Fourteen years ago, Alzheimer's disease (AD) genetics entered an era of exponential data growth, but the infrastructure to support and steward that data had yet to catch up. Large-scale genomic discovery demands more than storage; it requires coordination, ethical rigor, and a platform architecture that transforms raw data into shared knowledge. In response, the National Institute on Aging launched the Genetics of Alzheimer's Disease Data Storage Site (NIAGADS), not simply to house genetic data for AD and AD-related dementias (ADRD), but to enable its responsible reuse. What began in 2012 as a repository has evolved into an integrated system for policy-aligned access, harmonized data production, and broad community engagement. A detailed overview of NIAGADS was recently published as a Perspective in Alzheimer's & Dementia<sup>1</sup>. In this Commentary, we reflect on key lessons from building and operating NIAGADS at national scale, with the goal of informing the next generation of genomic platforms.

npj DementiaVol. 2(1)
University of Pennsylvania (US)
Industry, innovation and infrastructure
Openalex Percentile: Top 28%
Genomics and Rare Diseases
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