ArticleEpilepsia2021
Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system.
Article in Epilepsia, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 1 of them a synthesis that pooled it.
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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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
32 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The Minimum Data Set for Rare Diseases: Systematic Review.Journal of medical Internet research · 2023Pooled it
- Optimal approach to standardized documentation in epilepsy clinics: A scoping review.Epilepsia · 2026Article
- Understanding and overcoming delays to pediatric epilepsy surgery: a scoping review.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2026Article
- CharacterizingmedRxiv : the preprint server for health sciences · 2026Article
- Article
- The Medical Burden of Drug-Resistant Epilepsy in an Outpatient Clinic of a Tertiary Hospital: A Prospective Study Based on Real-World Evidence.European journal of neurology · 2025Article
- A companion to the development of common data elements for Sudden Unexpected Death in Epilepsy (SUDEP).Epilepsia open · 2025Article
- Enhancing sudden unexpected death in epilepsy (SUDEP) research through development of common data elements.Epilepsia open · 2025Article
- Clinical signatures of SYNGAP1-related disorders through data integration.Genetics in medicine : official journal of the American College of Medical Genetics · 2025Article
- Synergy in Child Neurology: Science, Collaboration, and Leadership - The 2024 Hower Award Lecture.Annals of the Child Neurology Society · 2025Article
- Deciphering the Natural History ofNeurology · 2025Article
- Precision Therapeutics in Lennox-Gastaut Syndrome: Targeting Molecular Pathophysiology in a Developmental and Epileptic Encephalopathy.Children (Basel, Switzerland) · 2025Review
- Common Data Elements Regarding Social Determinants of Health in Pediatric Epilepsy Research: A Concept Mapping Study.Pediatric neurology · 2025Article
- Treatment efficacy for infantile epileptic spasms syndrome in children with trisomy 21.Frontiers in pediatrics · 2025Article
- Clinical trials for Lennox-Gastaut syndrome: Challenges and priorities.Annals of clinical and translational neurology · 2024Review
- Implementing American Academy of Neurology Quality Measures in Antigua Using Quality Improvement Methodology.Neurology. Clinical practice · 2024Article
- The Australian Traumatic Brain Injury Initiative: Statement of Working Principles and Rapid Review of Methods to Define Data Dictionaries for Neurological Conditions.Neurotrauma reports · 2024Article
- Delineating clinical and developmental outcomes in STXBP1-related disorders.Brain : a journal of neurology · 2023Article
- Design, implementation, and inferential issues associated with clinical trials that rely on data in electronic medical records: a narrative review.BMC medical research methodology · 2023Review
- Article
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25 authors.
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Abstract
objectiveCommon data elements (CDEs) are standardized questions and answer choices that allow aggregation, analysis, and comparison of observations from multiple sources. Clinical CDEs are foundational for learning health care systems, a data-driven approach to health care focused on continuous improvement of outcomes. We aimed to create clinical CDEs for pediatric epilepsy.
methodsA multiple stakeholder group (clinicians, researchers, parents, caregivers, advocates, and electronic health record [EHR] vendors) developed clinical CDEs for routine care of children with epilepsy. Initial drafts drew from clinical epilepsy note templates, CDEs created for clinical research, items in existing registries, consensus documents and guidelines, quality metrics, and outcomes needed for demonstration projects. The CDEs were refined through discussion and field testing. We describe the development process, rationale for CDE selection, findings from piloting, and the CDEs themselves. We also describe early implementation, including experience with EHR systems and compatibility with the International League Against Epilepsy classification of seizure types.
resultsCommon data elements were drafted in August 2017 and finalized in January 2020. Prioritized outcomes included seizure control, seizure freedom, American Academy of Neurology quality measures, presence of common comorbidities, and quality of life. The CDEs were piloted at 224 visits at 10 centers. The final CDEs included 36 questions in nine sections (number of questions): diagnosis (1), seizure frequency (9), quality of life (2), epilepsy history (6), etiology (8), comorbidities (2), treatment (2), process measures (5), and longitudinal history notes (1). Seizures are categorized as generalized tonic-clonic (regardless of onset), motor, nonmotor, and epileptic spasms. Focality is collected as epilepsy type rather than seizure type. Seizure frequency is measured in nine levels (all used during piloting). The CDEs were implemented in three vendor systems. Early clinical adoption included 1294 encounters at one center. SIGNIFICANCE: We created, piloted, refined, finalized, and implemented a novel set of clinical CDEs for pediatric epilepsy.
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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.