title: The Danish Neuro-Oncology Registry: establishment, completeness and validity.
abstract: 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.
authors: Department of Oncology, Odense University Hospital, 5000, Odense, Denmark. steinbjoern.hansen@rsyd.dk.|Institute of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark. steinbjoern.hansen@rsyd.dk.
authors: Steinbjørn
authors: S
authors: Hansen
authors: Center for Clinical Epidemiology, Odense University Hospital & Institute of Clinical Research, University of Southern Denmark, Odense, Denmark.
authors: Jan
authors: J
authors: Nielsen
authors: Department of Neurosurgery, Aalborg University Hospital, Aalborg, Denmark.
authors: René J
authors: RJ
authors: Laursen
authors: Department of Neurology, Nordsjælland Hospital, University of Copenhagen, Hillerød, Denmark.
authors: Birthe Krogh
authors: BK
authors: Rasmussen
authors: Center for Clinical Epidemiology, Odense University Hospital & Institute of Clinical Research, University of Southern Denmark, Odense, Denmark.
authors: Bente Mertz
authors: BM
authors: Nørgård
authors: Center for Clinical Epidemiology, Odense University Hospital & Institute of Clinical Research, University of Southern Denmark, Odense, Denmark.
authors: Kim Oren
authors: KO
authors: Gradel
authors: Center for Clinical Epidemiology, Odense University Hospital & Institute of Clinical Research, University of Southern Denmark, Odense, Denmark.
authors: Rikke
authors: R
authors: Guldberg
mesh_terms: D003718:Denmark; D006801:Humans; D008495:Medical Oncology / Q000706:statistics & numerical data*; D009462:Neurology / Q000706:statistics & numerical data*; D012042:Registries / Q000706:statistics & numerical data*; D015203:Reproducibility of Results; D000071077:Surgical Oncology / Q000706:statistics & numerical data
keywords: Brain neoplasms; Clinical quality indicators; Completeness; Database research; Glioma; Validity