The Danish Neuro-Oncology Registry: establishment, completeness and validity

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.

Risk for use of antidepressants, anxiolytics, and hypnotics in partners of glioma patients—A nationwide study covering 19 years of prescriptions

“…Loss to follow‐up occurs only due to emigration and was taken into account by censoring at date of emigration from the Danish Civil Registration System . Furthermore, using the nationwide Danish Neuro‐Oncology Register, which has been shown to have an overall completeness of 92% allowed us to include high quality medical data with minimal risk of bias related to retrospective recall, and with minimal selection bias compared with self‐reported data.…”

“…Information on glioma patients' disease characteristics was obtained from the Danish Neuro‐Oncology Register, which, since 2009, has registered all cases of histologically and surgically verified glioma . Disease characteristics included Eastern Cooperative Oncology Group performance status (0–1, 2, ≥3) before surgery or, if unavailable, after surgery, grade (WHO I and II, III and IV), longest‐lasting symptom (neurological deficit, seizure, cognitive symptoms, headache, or other), epilepsy at onset (yes, no), and treatment (surgery, surgery and chemotherapy, surgery and radiation, or surgery, chemotherapy, and radiation).…”

“…Being the partner of a loved one with a life‐threatening cancer is stressful, and practical caregiving demands and emotional suffering may be burdensome . Glioma is the most common primary brain tumor, with an age‐adjusted incidence rate of 4.67 to 5.73 per 100 000, and approximately 600 new cases in Denmark annually . The disease is characterized by intensive treatment, complex symptoms (eg, focal neurological problems, personality changes, mood disturbance, cognitive decline), and poor 5‐year relative survival of less than 5% in glioblastoma .…”

The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care

“…Quality control occurs at three levels; as part of central validation e.g., for personal identifiers and hospital codes, as part of the administrative curation of data at the registry organizations, e.g., for dates and missing data, performed by the RKKP, the CRN and the RCCs and as part of quality control studies of core variables. Most cancer-related clinical registries have completeness rates exceeding 95% when compared to registered diagnoses in the national cancer registries and in patient-administrative systems (Table 3) [14][15][16][17][18][19][20][21][22][23][24][25][26]. Differences in diagnostic criteria and alternative treatment routes may explain missed inclusion in the clinical registries.…”

“…Validation studies are crucial to improve data quality and detect differences in coding systems and algorithms and incompatibilities between different data sources. In the Swedish registries for gynecologic cancer, breast cancer, prostate cancer and gastro-esophageal cancer validation studies focused on core variables in 400-800 patients have shown 82-91% agreement on individual data point level, which demonstrates a need for continuous quality assurance initiatives [17,20,[24][25][26].…”