ArticleThe journal of spinal cord medicine2024
Establishing an Australian pediatric spinal cord disorder register using consumer, health professional, and researcher perspectives.
Article in The journal of spinal cord medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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.
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Who cites it
1 citing paper in PubMed, 0 citations in OpenAlex.
- Clinical Audit Determining Standard of Care for Musculoskeletal Health in Children With Spinal Cord Disorders.Topics in spinal cord injury rehabilitation · 2025Article
Corrections and comments
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Authors and funding
6 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
CONTEXT/
objectivePediatric spinal cord disorders (SCD) are rare, and epidemiological data available to support treatment are lacking. The implementation of a national data register tailored to this population would greatly assist clinicians and therapists in guiding clinical practice. This study gathered perspectives surrounding a prospective national pediatric spinal cord disorder register.
designSurvey and modified Delphi technique.
settingAustralia.
participantsSCD consumers, health professionals, and researchers.
interventionsNone. OUTCOME MEASURES: None.
resultsPurposive sampling recruited 6 consumers and 52 health professionals and researchers working in the field of SCD to participate. The consumer survey contained items including demographic information, general and pediatric-specific SCD health issues, and questions regarding activity and participation. The modified Delphi survey required health professionals and researchers to identify which "collection items" and "administrative features" should be included in a national SCD register for both clinical and research purposes. Seventeen essential and nine optional items, two outcome measures, data collection methods, consumer access, definition of "pediatric," and use of International Data Standards were included in the consensus for a minimum dataset.
conclusionThis study developed a minimum dataset that could inform an Australian register for pediatric SCD. A register linking to an adult database is recommended to ensure coverage across the lifespan. While items for a minimum dataset have been recommended, this dataset is large. Review and refinement of this list are recommended to ensure the register is not overly time-consuming for practical use.
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