Data sharing as the foundation of discovery: ADNI and breakthroughs in Alzheimer's disease

Author:

Travaglia Alessio1ORCID,Hoffmann Steve2

Affiliation:

1. Translational Science, Neuroscience Foundation for the National Institutes of Health North Bethesda Maryland USA

2. Science Partnerships, Translational Science Foundation for the National Institutes of Health North Bethesda Maryland USA

Abstract

AbstractThe COVID pandemic has shown that when the research community comes together, we can conquer the most complex biomedical challenges. Collaboration and teamwork among federal agencies, private organizations, and researchers have been crucial in the development of vaccines and therapeutics against COVID.Possibly the first example of such cross‐functional collaboration is the Alzheimer's Disease Neuroimaging Initiative (ADNI), the largest and longest continually monitored Alzheimer's study. ADNI was designed and operated as a public‐private partnership, managed by the Foundation for the National Institutes of Health.This article shows how recent successes in the Alzheimer's field are directly a result of ADNI's open and transparent sharing of knowledge, expertise, and resources, which have allowed researchers to advance their understanding of Alzheimer's and tackle challenges in a relatively short period of time. ADNI's approach to open‐source innovation also served as a model for addressing other complex diseases and led to numerous collaborative research initiatives.Highlights The Alzheimer's Disease Neuroimaging Initiative (ADNI) was designed, structured, and operated as a public‐private partnership, managed by the Foundation for the National Institutes of Health. The recent successes in the Alzheimer's field are directly a result of ADNI's efforts. Open and transparent sharing of knowledge, expertise, and resources allowed researchers to advance their understanding of Alzheimer's and tackle challenges in a relatively short period of time.

Publisher

Wiley

Reference12 articles.

1. Impact of the Alzheimer's Disease Neuroimaging Initiative, 2004 to 2014

2. Neurology Live.Clinical trial design in Alzheimer's disease research.2024. Available at:https://www.neurologylive.com/view/clinical‐trial‐design‐in‐alzheimers‐disease‐research

3. https://adni.loni.usc.edu/study‐design/#background‐container

4. https://adni.loni.usc.edu/data‐samples/access‐data/

5. The Alzheimer's Disease Neuroimaging Initiative and the role and contributions of the Private Partners Scientific Board (PPSB)

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