ArticleJournal of the American Medical Informatics Association : JAMIA2024
Identifying the capabilities for creating next-generation registries: a guide for data leaders and a case for "registry science".
Article in Journal of the American Medical Informatics Association : JAMIA, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- From interface to outcome: a 4I framework for AI-linked functionality in electronic health records.BMC medical informatics and decision making · 2026Pooled it
- From electronic health records to real-world evidence: Savana Next-Generation Registry digital solution.ESMO real world data and digital oncology · 2026Article
- Are Traditional Registries Becoming Obsolete in the Modern Digital Health Ecosystem?Journal of medical Internet research · 2026Article
- A practical framework to approach the development and evaluation of patient registries for rare diseases.Orphanet journal of rare diseases · 2026Review
- Visualizing the Maternal Health Journey for Learning Health Systems: Mixed Methods Combined Experience Approach.Journal of participatory medicine · 2026Article
- A method to enable clinical and translational research teams with custom real-world data from electronic health record systems.Journal of clinical and translational science · 2026Article
- Transparency of medical artificial intelligence systems.Nature reviews bioengineering · 2026Article
- Higher mortality following SARS-CoV-2 infection in rural versus urban dwellers persists for two years post-infection.Nature communications · 2025Article
- The Association of Long COVID and CKD: Findings from the National Clinical Cohort Collaborative.Clinical journal of the American Society of Nephrology : CJASN · 2025Article
- Systematic curation and analysis of ovarian cancer data across multiple electronic record systems held within the UK National Health Service: a tertiary referral centre experience.ESMO real world data and digital oncology · 2025Article
- Long-Term Mortality Following SARS-CoV-2 Infection in Rural Versus Urban Dwellers With Autoimmune or Inflammatory Rheumatic Disease: A Retrospective Cohort Analysis From the National COVID Cohort Collaborative.Arthritis care & research · 2025Article
- Building a collaborative ecosystem across the IDeA-CTR networks in response to a public health emergency.Journal of clinical and translational science · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThe increasing demands for curated, high-quality research data are driving the emergence of a novel registry type. The need to assemble, curate, and export this data grows, and the conventional simplicity of registry models is driving the need for advanced, multimodal data registries-the dawn of the next-generation registry. MATERIALS AND
methodsThe article provides an outline of the technology roles and responsibilities needed for successful implementations of next-generation registries.
resultsWe propose a framework for the planning, construction, maintenance, and sustainability of this new registry type. DISCUSSION: A rubric of organizational, computational, and human resource needs is discussed in detail, backed by over 40 years of combined in-the-field experiences by the authors.
conclusionsA novel field, registry science, within the clinical research informatics domain, has arisen to offer its insights into conceiving, structuring, and sustaining this new breed of tools.
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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.