The origins of ADNI

Alzheimers Dement. 2024 Nov;20(11):8188-8191. doi: 10.1002/alz.14256. Epub 2024 Oct 6.

Abstract

A brief history of events surrounding the conceptualization and original implementation of the Alzheimer's Disease Neuroimaging Initiative (ADNI) as a public-private partnership (PPP) is provided from the perspective of three individuals directly involved from the outset. Potential barriers and how they were addressed are summarized, especially the decision to make all data freely accessible in real-time. Decisions made at the beginning of ADNI are revisited in light of what has been learned over the past 20 years, especially the importance of the investment in cerebrospinal fluid (CSF) and blood measures and the commitment to data sharing. The key elements of ADNI's success from the authors' perspective are also summarized. HIGHLIGHTS: Informal interactions among colleagues were the beginning of something big. An NIH Director's personal decision on open data sharing has had perhaps the greatest impact of any single decision in the past several decades in terms of advancing clinical biomarker research. After 20 years, blood-based biomarkers of brain disease may soon take the place of brain imaging for purposes of diagnosis and drug development.

Keywords: ADNI history; biomarkers; clinical trials; data sharing; disease‐modifying; public–private‐partnerships.

Publication types

  • Historical Article

MeSH terms

  • Alzheimer Disease* / diagnosis
  • Biomarkers / blood
  • Biomarkers / cerebrospinal fluid
  • Brain / diagnostic imaging
  • Brain / pathology
  • History, 20th Century
  • History, 21st Century
  • Humans
  • Information Dissemination
  • Neuroimaging*
  • Public-Private Sector Partnerships*
  • United States

Substances

  • Biomarkers