Alzheimer’s Disease Neuroimaging Initiative

About ADNI
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Informatics

Informatics

ADNI comprises 11 cores, 60+ clinical acquisition sites, and several analysis sites that feed data into the Informatics Core. Data flow through various information systems, institutions, and individuals before being centralized at the informatics repository at LONI. This repository is a centralized and comprehensive informatics hub for well‐described, searchable, and multimodal data, and it provides authenticated researchers access to that data. Access has been granted to over 26,000 active investigators from 169 countries and has supported more than 405 million downloads of imaging, clinical, biomarker, and genetic data. The ADNI Informatics Core provides a user‐friendly web environment for all information regarding the ADNI project, including the protocols, the overall design and phases of ADNI, data access request forms, a Data Use Agreement (DUA), ADNI publications lists, analyses methods, and links to all manuscripts that have used ADNI data.

Workflow for Image Data Management

The workflow for managing image data in the ADNI project involves several steps to ensure data quality and accessibility.

Initially data collected from acquisition sites are entered into clinical and imaging databases.
Imaging cores then conduct QC and preprocessing of MR and PET images, followed by postprocessing and analysis by ADNI image analysts.
Meanwhile, biofluid samples are processed and the results are compiled.
Investigators can then download and analyze the data according to their research needs.

Access to ADNI Data

Access to ADNI data is tightly regulated and limited to site users and individuals, as approved by the Data Sharing and Publication Committee (DPC). Access levels determine the system features available to users: acquisition site personnel are restricted to uploading data from their site, whereas imaging core leaders are permitted broader capabilities such as uploading, downloading, editing, and deleting data. All data transactions are meticulously logged for transparency and accountability. Any notification regarding data corrections or recall can be selectively sent to users who have already downloaded those specific records.

The ADNI DPC oversees access for external investigators with an integrated online application and review process. This ensures that applicant information and committee decisions are seamlessly recorded, with automated email notifications for application status. Approved users are required to submit annual progress reports, facilitated by the online system, which also supports related tasks such as adding team members to approved applications and submitting manuscripts for DPC review. Detailed logs track all data accesses, providing study leadership with insights into data use at a granular level, whereas interactive project summary features provide project managers with insights into upload and download activity.

ADNI Applicant & Download Activities

The IDA at LONI was established to aid in data integration, access, and sharing among the growing community involved in neuroscience research, and its use for ADNI has supported the widespread distribution of ADNI data to the scientific community.

More than 47,735 total unique user accounts for ADNI have been created over the last 20 years, and 26,588 accounts are currently active. The annual number of applicants for ADNI data has grown exponentially over the last 15 years . Approved investigators have access to over 108,000 image data sets and related clinical, imaging, biomarker, and genetic data, resulting in more than 105 million downloads of raw and processed scans.

applicants image download activity per year

applicants clinical & genetic download activity per year

Users from around the world have accessed ADNI data continuously and download activity has been steadily increasing every year. The extensive amount of ever‐growing data collected in ADNI, including imaging, clinical, cognitive, biochemical, and genetic information, requires robust systems to process, integrate, and share it. In concert with ADNI changes and expansions over the years, the IDA has evolved to support ADNI data flows, storage, backup, searching, and sharing, with ongoing efforts to enhance data discovery and visualization. Its automated systems manage de‐identification tasks to securely upload and archive data, extract MRI and PET metadata from image files, coordinate data workflows among QC sites, integrate information across data types, and manage, log, and control data access.