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

**Authors:** Amanda Kuzma, Otto Valladares, Emily Greenfest-Allen, Laura Cantwell, Zivadin Katanic, Maureen Kirsch, Heather Nicaretta, Youli Ren, Heather White, Andrew Wilk, Pavel Kuksa, Wan-Ping Lee, Yuk Yee Leung, Gerard D. Schellenberg, Li-San Wang

PMC · DOI: 10.1038/s44400-026-00065-z · Npj Dementia · 2026-03-09

## TL;DR

This paper discusses the development and lessons learned from the NIAGADS platform, which supports genomic research on Alzheimer's disease and related dementias.

## Contribution

The paper provides insights into building a national genomic data platform for Alzheimer's disease with ethical and collaborative principles.

## Key findings

- NIAGADS evolved from a data repository into a comprehensive system for data stewardship and reuse.
- The platform emphasizes policy-aligned access and harmonized data production for Alzheimer's research.
- Key lessons from operating NIAGADS aim to guide future genomic platforms.

## 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 & Dementia1. 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.

## Linked entities

- **Diseases:** Alzheimer’s disease (MONDO:0004975)

## Full-text entities

- **Diseases:** AD (MESH:D000544)

## Full text

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## Figures

1 figure with captions in the complete paper: https://tomesphere.com/paper/PMC12971478/full.md

## References

5 references — full list in the complete paper: https://tomesphere.com/paper/PMC12971478/full.md

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Source: https://tomesphere.com/paper/PMC12971478