Strategies for Collection, Management, and Release of Data for Multi-Site Longitudinal Studies: Lessons from the ABCD Data Analysis, Informatics, & Resource Center

This paper synthesizes ten years of experience from the Adolescent Brain Cognitive Development SM (ABCD) Study’s Data Analysis, Informatics, & Resource Center (DAIRC), focusing on strategies for the collection, management, and release of data for a large, multi-site, multi-modal longitudinal study. We highlight lessons learned in two major domains: First, we describe the development and ongoing refinement of internal processes, including the design of cognitively ergonomic electronic data capture instruments, improvements to data ingestion and quality control procedures, and the development of recruitment, retention, and protocol completeness metrics as well as related tools to support results-based accountability efforts. We further describe how structure and adaptability have enhanced the DAIRC’s efficiency and resilience in the face of challenges such as the COVID-19 pandemic, participant mobility, and staff turnover at data collection sites. Second, we detail the development of standards for data curation and organization, as well as a sharing infrastructure that supports open science, transparency, and reproducibility, with the goal to lower barriers to scientific use of the ABCD data resource, facilitate collaboration, and promote best practices. We conclude by considering how these strategies can inform future multi-site longitudinal studies, providing a framework for scalable and sustainable data center operations.