ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2026
A cross-consortium, stakeholder-driven model for implementing a modern electronic data capture and submission system across the Alzheimer's Disease Research Centers Program.
Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Authors and funding
17 authors.
Funding
Abstract
introductionThe 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.
methodsA 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.
resultsResearch 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.