ArticleBMC research notes2016
The Danish Neuro-Oncology Registry: establishment, completeness and validity.
Article in BMC research notes, 2016. 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.
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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
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Quality indicators in neuro-oncology: Review of the literature and development of a new quality indicator set for glioma care through a two-round Delphi survey.Journal of neuro-oncology · 2022Pooled it
- Completeness Evaluation of Adult-Population-Based Cancer Registries: A Systematic Review.Cancers · 2025Review
- The risk of venous thromboembolism in adult patients with diffuse glioma: a nationwide population-based study.Acta oncologica (Stockholm, Sweden) · 2024Article
- Measuring the diagnostic management and follow-up imaging for glioma patients across Belgian hospitals between 2016 and 2019.Cancer medicine · 2024Article
- Postoperative epilepsy and survival in glioma patients: a nationwide population-based cohort study from 2009 to 2018.Journal of neuro-oncology · 2022Article
- What matters for people with brain cancer? Selecting clinical quality indicators for an Australian Brain Cancer Registry.Neuro-oncology practice · 2022Article
- Prediagnosis epilepsy and survival in patients with glioma: a nationwide population-based cohort study from 2009 to 2018.Journal of neurology · 2022Article
- Psychometric validity and reliability of the Danish version of the MD Anderson Symptom Inventory Brain Tumor Module.Neuro-oncology practice · 2021Article
- Comparing Glioblastoma Surgery Decisions Between Teams Using Brain Maps of Tumor Locations, Biopsies, and Resections.JCO clinical cancer informatics · 2019Article
- Treatment and survival of glioblastoma patients in Denmark: The Danish Neuro-Oncology Registry 2009-2014.Journal of neuro-oncology · 2018Article
- Epidemiology of glioma: clinical characteristics, symptoms, and predictors of glioma patients grade I-IV in the the Danish Neuro-Oncology Registry.Journal of neuro-oncology · 2017Article
- Global insights into brain tumor registries: Lessons for countries establishing a national brain tumor registry.Neuro-oncology advancesReview
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe Danish Neuro-Oncology Registry (DNOR) is a nationwide clinical cancer database that has prospectively registered data on patients with gliomas since January 2009. The purpose of this study was to describe the establishment of the DNOR and further to evaluate the database completeness of patient registration and validity of data.
methodsThe completeness of the number of patients registered in the database was evaluated in the study period from January 2009 through December 2014 by comparing cases reported to the DNOR with the Danish National Patient Registry and the Danish Pathology Registry. The data validity of important clinical variables was evaluated by a random sample of 100 patients from the DNOR using the medical records as reference.
resultsA total of 2241 patients were registered in the DNOR by December 2014 with an overall patient completeness of 92 %, which increased during the study period (from 78 % in 2009 to 96 % in 2014). Medical records were available for all patients in the validity analyses. Most variables showed a high agreement proportion (56-100 %), with a fair to good chance-corrected agreement (k = 0.43-1.0).
conclusionsThe completeness of patient registration was very high (92 %) and the validity of the most important patient data was good. The DNOR is a newly established national database, which is a reliable source for future scientific studies and clinical quality assessments among patients with gliomas.
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