Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
A cross-consortium, stakeholder-driven model for implementing a modern electronic data capture and submission system across the Alzheimer's Disease Research Centers Program.
СтатьяПоддержка NIH: внешняя программаНазвание и аннотация: Перевод пока не подготовлен
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Biber Sarah, Gothard Sarah, Murchison Charles F, McLeod Laura, Gauthreaux Kathryn, HewaNadungodage Chandima, Cheng Emily, Welsch Jessica, Culhane Jessica E, Yasuda Sarah, Stockwell Hannah, Allimatti Shilpa, Bauer Mark, Reader Jonathan M, Kukull Walter, Zozus Meredith, Das Sudeshna
Аннотация
INTRODUCTION: The National Alzheimer's Coordinating Center (NACC) and Alzheimer's Disease Research Center (ADRC) Program advances dementia research by collecting and sharing standardized, longitudinal data, including the Uniform Data Set with the global research community. To modernize workflow and accelerate the availability of analyzable data, we co-developed a consortium-wide Electronic Data Capture and Submission system.
METHODS: A cross-disciplinary workgroup of ADRC and NACC members co-developed the system using a stakeholder-centered sociotechnical implementation model. Subgroups focused on requirements, development, and training. Surveys and pilot testing across centers guided design and priorities.
RESULTS: Research Electronic Data Capture was selected as the foundational platform. Deliverables included modular UDS version 4 instruments, embedded logic and automated quality checks, dynamic training resources, and an API-based submission pipeline to NACC. The platform was adopted across all 36 ADRCs and surveys indicated high user satisfaction.
DISCUSSION: Beyond infrastructure, this initiative provides a scalable, stakeholder-driven implementation model that supports higher-quality, more timely multicenter data submission, accelerating biomarker validation, early detection studies, and precision-medicine analyses.
HIGHLIGHTS: A cross-disciplinary workgroup of ADRC and NACC members designed a stakeholder-centric sociotechnical implementation model. The workgroup drove the adoption of a modernized data infrastructure across a national consortium. Deployed a modern electronic data capture and submission system for the ADRC program. Leveraged REDCap as a flexible, scalable tool for a large-scale EDCS system.
METHODS: A cross-disciplinary workgroup of ADRC and NACC members co-developed the system using a stakeholder-centered sociotechnical implementation model. Subgroups focused on requirements, development, and training. Surveys and pilot testing across centers guided design and priorities.
RESULTS: Research Electronic Data Capture was selected as the foundational platform. Deliverables included modular UDS version 4 instruments, embedded logic and automated quality checks, dynamic training resources, and an API-based submission pipeline to NACC. The platform was adopted across all 36 ADRCs and surveys indicated high user satisfaction.
DISCUSSION: Beyond infrastructure, this initiative provides a scalable, stakeholder-driven implementation model that supports higher-quality, more timely multicenter data submission, accelerating biomarker validation, early detection studies, and precision-medicine analyses.
HIGHLIGHTS: A cross-disciplinary workgroup of ADRC and NACC members designed a stakeholder-centric sociotechnical implementation model. The workgroup drove the adoption of a modernized data infrastructure across a national consortium. Deployed a modern electronic data capture and submission system for the ADRC program. Leveraged REDCap as a flexible, scalable tool for a large-scale EDCS system.