The Danish Neuro-Oncology Registry:establishment, completeness and validity
| Autor: | Bente Mertz Nørgård, Kim Oren Gradel, Steinbjørn Hansen, Birthe Krogh Rasmussen, Jan Nielsen, René Johannes Laursen, Rikke Guldberg |
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| Jazyk: | angličtina |
| Rok vydání: | 2016 |
| Předmět: |
Completeness
medicine.medical_specialty Pediatrics Neuro oncology Denmark Medical Oncology Database research General Biochemistry Genetics and Molecular Biology Validity Danish 03 medical and health sciences 0302 clinical medicine medicine Journal Article Humans Registries Medicine(all) Patient registry business.industry Biochemistry Genetics and Molecular Biology(all) Medical record Reproducibility of Results Clinical quality indicators General Medicine Patient data Glioma Patient registration language.human_language Surgical Oncology Brain neoplasms Neurology 030220 oncology & carcinogenesis Emergency medicine language National database Completeness (statistics) business 030217 neurology & neurosurgery Research Article |
| Zdroj: | Hansen, S, Nielsen, J, Laursen, R J, Rasmussen, B K, Nørgård, B M, Gradel, K O & Guldberg, R 2016, ' The Danish Neuro-Oncology Registry : establishment, completeness and validity ', BMC Research Notes, vol. 9, no. 1, 425 . https://doi.org/10.1186/s13104-016-2233-x Hansen, S, Nielsen, J, Laursen, R J, Rasmussen, B K, Nørgård, B M, Gradel, K O & Sørensen, R G 2016, ' The Danish Neuro-Oncology Registry : establishment, completeness and validity ', BMC Research Notes, vol. 9, 425 . https://doi.org/10.1186/s13104-016-2233-x BMC Research Notes |
| Popis: | BACKGROUND: The 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.METHODS: The 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.RESULTS: A 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).CONCLUSIONS: The 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. |
| Databáze: | OpenAIRE |
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