The informatics of ADNI

Abstract

The Alzheimer's Disease Neuroimaging Initiative (ADNI) has revolutionized the landscape of Alzheimer's research through its Informatics Core, which has facilitated unprecedented data standardization and sharing. Over 20 years, ADNI established a robust informatics framework, enabling the validation of biomarkers and supporting global research efforts. The Informatics Core, centered at the Laboratory of Neuro Imaging (LONI), provides a comprehensive data hub that ensures data quality, accessibility, and security, fostering over 5600 publications and significant scientific advancements. By embracing open data sharing principles, ADNI set a gold standard in data transparency, allowing over 26,000 investigators from 169 countries to access and download a wealth of multimodal data. This collaborative approach not only accelerated biomarker discovery and drug development and advanced our understanding of Alzheimer's disease but also has served as a model for other research initiatives, demonstrating the transformative potential of carefully designed informatics models and shared data in driving global scientific progress. HIGHLIGHTS: Accelerating biomarker discovery and drug development for Alzheimer's disease. Alzheimer's Disease Neuroimaging Initiative's (ADNI's) open data sharing drives scientific progress. Data exploration and coupled analytics to data archives.

Keywords: Alzheimer's Disease Neuroimaging Initiative; Alzheimer's disease; biomarkers; data sharing; informatics; open data.

FIGURE 1

ADNI publications by year. The research output from ADNI data is not only voluminous but also diverse, covering various aspects of Alzheimer's disease, from genetic factors to biomarker development. Through 2023, the total count of publications is 5583. One of the highest‐impact ADNI publications has an RCR of 91.13, and 39 ADNI publications are in the 99th percentile or above in terms of influence, showcasing their significant contribution to the field. ADNI, Alzheimer's Disease Neuroimaging Initiative; RCR, relative citation ratio.

FIGURE 2

ADNI data added by year. ADNI collects a wide range of data types, including clinical data, genetics data, MRI data, PET image data, and image analysis results, providing a comprehensive resource for researchers. ADNI supports a multimodal approach to Alzheimer's research, integrating genetic, imaging, and cognitive data. ADNI, Alzheimer's Disease Neuroimaging Initiative.

FIGURE 3

A timeline of ADNI milestones. ADNI has now facilitated over 5583 publications. A total of 185,079 subject images have been uploaded, and 405,414,380 image downloads have been completed. Data use applications have grown to more than 30,000. ADNI, Alzheimer's Disease Neuroimaging Initiative.

FIGURE 4

Map of the locations of investigators who applied for data use. ADNI's open data access policy, which provides data without embargo to the entire scientific community, has enabled an extensive global dissemination and utilization of the ADNI data by researchers across academia, industry, and government sectors in numerous countries worldwide. Only the top 25 countries with the highest number of applications are shown and listed. ADNI, Alzheimer's Disease Neuroimaging Initiative.

FIGURE 5

ADNI applicants and image downloads by year. The number of annual image downloads from ADNI has steadily increased over the years, reflecting the growing importance of this data set in AD research. In 2022 alone, there were over 20 million data downloads from the ADNI database, highlighting the scientific community's immense interest in and utilization of this valuable resource. The primary users of ADNI data include academic researchers, pharmaceutical and biotechnology companies, scanner manufacturers, government scientists, and others, including high school teachers. AD, Alzheimer's disease; ADNI, Alzheimer's Disease Neuroimaging Initiative.

FIGURE 6

ADNI applicants and clinical and genetic downloads by year. The number of annual clinical and genetic downloads from ADNI has increased over the years, necessitating the ADNI Informatics Core to build and manage a robust and sophisticated informatics framework to meet the growing demand. ADNI, Alzheimer's Disease Neuroimaging Initiative.

FIGURE 7

Diagram of the flow between sites, cores, and investigators. ADNI has established a well‐defined data flow process to ensure consistency and quality across the multiple participating sites and cores. ADNI's processes standardize data collection, integrate information across cores, and facilitate data sharing among investigators. ADNI, Alzheimer's Disease Neuroimaging Initiative.

FIGURE 8

Main page of the ADNI website. ADNI, Alzheimer's Disease Neuroimaging Initiative.