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. 2016 Aug 30;9(1):425.
doi: 10.1186/s13104-016-2233-x.

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

Steinbjørn Hansen  1   2 , Jan Nielsen  3 , René J Laursen  4 , Birthe Krogh Rasmussen  5 , Bente Mertz Nørgård  3 , Kim Oren Gradel  3 , Rikke Guldberg  3
Affiliations

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

Steinbjørn Hansen et al. BMC Res Notes. .

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.

Keywords: Brain neoplasms; Clinical quality indicators; Completeness; Database research; Glioma; Validity.

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Figures

Fig. 1
Fig. 1
Data model of DNOR with the number of forms entered (left) and the distribution of number of patients (middle) within each subtype of forms, and departments (right) responsible for entering clinical data into DNOR from 2009 to 2014. Asterisk some of the patients have been registered with multiple forms
See this image and copyright information in PMC

References

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