Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI

Mulcahey, M. J.; Sheikh, Muniza; Arango-Lasprilla, Juan Carlos; Augutis, Marika; Garner, Elizabeth O.; Hagen, Ellen Merete; Jakeman, Lyn B.; Kelly, E; Martin, Rebecca; Odenkirchen, Joanne; Scheel‐Sailer, Anke; Schottler, Jennifer; Taylor, Heather B.; Thielen, Christina Calhoun; Zebracki, Kathy

doi:10.1038/sc.2016.139

Cited by 18 publications

(9 citation statements)

References 54 publications

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“…To do this, forms were created using the ODM editor available on the Medical Data-Models portal [ 12 ]. This portal is a metadata registry operated by the Institute of Medical Informatics in Münster and can be used to create, analyze, share, and reuse medical forms; it serves as an infrastructure for academic medical research (noncommercial) [ 16 ]. Each data element in the ODM format was assigned a Unified Medical Language System (UMLS) concept code.…”

Section: Methodsmentioning

confidence: 99%

Common Data Elements for Meaningful Stroke Documentation in Routine Care and Clinical Research: Retrospective Data Analysis

Berenspöhler¹,

Minnerup²,

Dugas³

et al. 2021

JMIR Med Inform

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Background Medical information management for stroke patients is currently a very time-consuming endeavor. There are clear guidelines and procedures to treat patients having acute stroke, but it is not known how well these established practices are reflected in patient documentation. Objective This study compares a variety of documentation processes regarding stroke. The main objective of this work is to provide an overview of the most commonly occurring medical concepts in stroke documentation and identify overlaps between different documentation contexts to allow for the definition of a core data set that could be used in potential data interfaces. Methods Medical source documentation forms from different documentation contexts, including hospitals, clinical trials, registries, and international standards, regarding stroke treatment followed by rehabilitation were digitized in the operational data model. Each source data element was semantically annotated using the Unified Medical Language System. The concept codes were analyzed for semantic overlaps. A concept was considered common if it appeared in at least two documentation contexts. The resulting common concepts were extended with implementation details, including data types and permissible values based on frequent patterns of source data elements, using an established expert-based and semiautomatic approach. Results In total, 3287 data elements were identified, and 1051 of these emerged as unique medical concepts. The 100 most frequent medical concepts cover 9.51% (100/1051) of all concept occurrences in stroke documentation, and the 50 most frequent concepts cover 4.75% (50/1051). A list of common data elements was implemented in different standardized machine-readable formats on a public metadata repository for interoperable reuse. Conclusions Standardization of medical documentation is a prerequisite for data exchange as well as the transferability and reuse of data. In the long run, standardization would save time and money and extend the capabilities for which such data could be used. In the context of this work, a lack of standardization was observed regarding current information management. Free-form text fields and intricate questions complicate automated data access and transfer between institutions. This work also revealed the potential of a unified documentation process as a core data set of the 50 most frequent common data elements, accounting for 34% of the documentation in medical information management. Such a data set offers a starting point for standardized and interoperable data collection in routine care, quality management, and clinical research.

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Section: Methodsmentioning

confidence: 99%

Common Data Elements for Meaningful Stroke Documentation in Routine Care and Clinical Research: Retrospective Data Analysis

Berenspöhler¹,

Minnerup²,

Dugas³

et al. 2021

JMIR Med Inform

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“…The methods we describe expand on those used by the National Institute of Neurological Diseases and Stroke (NINDS) (5,6) by providing a structured hierarchical approach to CDE development and very clear, step-by-step instructions. Our methodology incorporates the expertise of physicians, scientists, research coordinators, data scientists, and statisticians; and is structured to be successfully utilized in any field of interest and be completed in the absence of funding or sponsorship.…”

Section: A Delphi Methods Based International Consensus Approach For Cde Developmentmentioning

confidence: 99%

Design and Rationale for Common Data Elements for Clinical Research in Pediatric Critical Care Medicine

Ward

Flori

Bennett

et al. 2020

Pediatric Critical Care Medicine

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Objective: Common Data Elements (CDEs), are a combination of a precisely defined question paired with a specified set of responses. CDEs contribute to the NIH-supported principle of FAIRness (Findable, Accessible, Interoperable, and Reusable) of research data. Routine use of CDEs and standardized definitions within pediatric critical care research is likely to promote collaboration, improve quality and consistency of data collection, improve overall efficiency of study or trial setup, and facilitate cross-study comparisons, meta-analysis and merging of study cohorts. The purpose of this PCCM Perspective is to establish a road map for the development of multinational, multidisciplinary consensus based CDEs that could be adapted for use within any pediatric critical care subject area.

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“…42 Testing of psychometric properties (eg, test-retest reliability, responsiveness) for the Pediatric NRS has yet to be conducted and is forthcoming. The National Institute of Neurological Disorders and Stroke Common Data Element Sets (CDES) 60 has designated both of these instruments, Pediatric NRS and SATCo, as exploratory for children with SCI. As published works further delineating the utility of each instrument 14,16,45 are published, we anticipate that the exploratory status will be reexamined.…”

Section: Conflicts Of Interestmentioning

confidence: 99%

Activity-Based Therapy Targeting Neuromuscular Capacity After Pediatric-Onset Spinal Cord Injury

Behrman

Argetsinger

Roberts

et al. 2019

Topics in Spinal Cord Injury Rehabilitation

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Background: Activity-based therapies aim to improve neuromuscular capacity after spinal cord injury (SCI). Objective: The purpose of this prospective study was to report the impact of Activity-based Locomotor Training (AB-LT) on neuromuscular capacity in pediatric patients with SCI. Methods: Participants were enrolled for their first episode of AB-LT for a minimum of 60 daily, 1.5-hour sessions. The Segmental Assessment of Trunk Control (SATCo) and the Pediatric Neuromuscular Recovery Scale (Pediatric NRS) were assessed initially, every 20 sessions, and post 60 sessions. Results: Twenty-six consecutive patients, mean age 5 years (SD = 3), completed a mean 55 sessions (SD = 4) within 63 weekdays (SD = 9). The Pediatric NRS total score improved significantly, adjusted mean 11.4, from initial to post-60 sessions (p < .05) with an average adjusted evaluation-toevaluation 3.7 change. SATCo scores improved significantly across 60 sessions, mean change 5.2, an estimated 1.7 change between evaluations (p < .05). Age at enrollment and chronicity had no effect; however, initial neuromuscular capacity scores were negatively correlated with change scores (p < .05). Conclusion: Sixty AB-LT sessions significantly improved trunk and neuromuscular capacity in children with SCI, regardless of age or chronicity at enrollment. Patients with lower initial scores made greater improvements than patients with higher initial neuromuscular capacity. Anecdotal parent reports of their child's functional change in the home and community highlight the synergy between quantitative change in neuromuscular capacity and meaningful, improved quality of life and the need for formal investigation of this relationship.

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Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI

Abstract: The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.

Cited by 18 publications

References 54 publications

Common Data Elements for Meaningful Stroke Documentation in Routine Care and Clinical Research: Retrospective Data Analysis

Common Data Elements for Meaningful Stroke Documentation in Routine Care and Clinical Research: Retrospective Data Analysis

Design and Rationale for Common Data Elements for Clinical Research in Pediatric Critical Care Medicine

Activity-Based Therapy Targeting Neuromuscular Capacity After Pediatric-Onset Spinal Cord Injury

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