ArticleJAMIA open2022
Generalizable EHR-R-REDCap pipeline for a national multi-institutional rare tumor patient registry.
Article in JAMIA open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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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.
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.
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Who cites it
7 citing papers in PubMed.
- Exploring Technological Solutions for Interoperability Between Patient Electronic Medical Records and Clinical Registries: Scoping Review.Journal of medical Internet research · 2026Article
- Assessment of Missing Data on Glaucoma Severity Among Participants in the NIH All of Us Research Program of the United States.Journal of glaucoma · 2025Article
- Examining Patient- and Community-Level Factors Associated with Pediatric Mental Healthcare Access Within a Patient Navigation Program.Community mental health journal · 2024Article
- Identifying Risk Factors Associated with Repeated Referrals Within a Pediatric Navigation Program.Journal of community health · 2023Article
- Migrating a Well-Established Longitudinal Cohort Database From Oracle SQL to Research Electronic Data Entry (REDCap): Data Management Research and Design Study.JMIR formative research · 2023Article
- StoryboardR: an R package and Shiny application designed to visualize real-world data from clinical patient registries.JAMIA open · 2023Article
- The Merkel Cell Carcinoma Patient Registry: From Promise to Prototype to Patient.Journal of registry management · 2022Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo develop a clinical informatics pipeline designed to capture large-scale structured Electronic Health Record (EHR) data for a national patient registry. MATERIALS AND
methodsThe EHR-R-REDCap pipeline is implemented using R statistical software to remap and import structured EHR data into the Research Electronic Data Capture (REDCap)-based multi-institutional Merkel Cell Carcinoma (MCC) Patient Registry using an adaptable data dictionary.
resultsClinical laboratory data were extracted from EPIC Clarity across several participating institutions. Laboratory values (Labs) were transformed, remapped, and imported into the MCC registry using the EHR labs abstraction (eLAB) pipeline. Forty-nine clinical tests encompassing 482 450 results were imported into the registry for 1109 enrolled MCC patients. Data-quality assessment revealed highly accurate, valid labs. Univariate modeling was performed for labs at baseline on overall survival (
conclusionWe demonstrate feasibility of the facile eLAB workflow. EHR data are successfully transformed and bulk-loaded/imported into a REDCap-based national registry to execute real-world data analysis and interoperability.
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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.