Neurobagel communities: A framework for data harmonization within consortia
Year: 2026
Type: conference-abstract
Abstract: For multicenter research consortia with existing or ongoing data collection, a key challenge is determining which clinical or cognitive assessments are available at each site, and for which subjects. Site-specific naming, organization, and access control complicate the curation of measures for pooled analyses, highlighting the need for standardization tools for assessment data. Neurobagel is a global tool ecosystem for decentralized cohort discovery that aims to address these challenges. Using Neurobagel, sites can easily build data dictionaries for local tabular data using standardized, FAIR vocabularies and create harmonized representations of subject data in a discoverable local Neurobagel “node.”Yet, the diversity of assessments used across different consortia makes finding one vocabulary capturing all domain-specific concepts challenging. One solution is to combine multiple vocabularies, but this requires expert guidance to create crosswalks for overlapping terms and ensure consistent term use. A single mega-ontology with every term of interest across consortia is also unrealistic, given the high governance burden and complexity of defining assessments universally. For consortia, an effective solution for within-consortium assessment term harmonization must build on existing coordination and governance.Community-governed vocabularies offer the flexibility to describe decentralized data using consistent terminology tailored to the community’s needs. The Brain Imaging Data Structure has shown how subcommunity-driven development is crucial for adapting a standard to different research contexts, while also improving neuroimaging data reusability. Applying these principles, we extended Neurobagel to allow consortia to implement standardized vocabularies for assessments of interest without deep technical expertise. We co-developed this functionality with the ENIGMA-Parkinson’s Disease (PD) consortium, who are early adopters as the first Neurobagel subcommunity.
Source: Figshare
Language: English
Subfield: Information Systems
Field: Computer Science
Domain: Physical Sciences
Open Access status: green
OpenAlex ID: W7203725657