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

被引：6

作者：

Hansen S. ^{[1
,2
]}

Nielsen J. ^{[3
]}

Laursen R.J. ^{[4
]}

Rasmussen B.K. ^{[5
]}

Nørgård B.M. ^{[3
]}

Gradel K.O. ^{[3
]}

Guldberg R. ^{[3
]}

机构：

[1] Department of Oncology, Odense University Hospital, Odense

[2] Institute of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Odense

[3] Center for Clinical Epidemiology, Odense University, Hospital and Institute of Clinical Research, University of Southern Denmark, Odense

[4] Department of Neurosurgery, Aalborg University Hospital, Aalborg

[5] Department of Neurology, Nordsjælland Hospital, University of Copenhagen, Hillerød

来源：

BMC Research Notes | / 9卷 / 1期

关键词：

Brain neoplasms; Clinical quality indicators; Completeness; Database research; Glioma; Validity;

D O I：

10.1186/s13104-016-2233-x

中图分类号：

学科分类号：

摘要：

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. © 2016 The Author(s).

引用

共 25 条

[1]

Hansen S., Green A., Nielsen J., Haugaard M., Laursen R., Schultz H., Rasmussen B., Broholm H., Andersen P., Kosteljanetz M., Danish Neuro-Oncology Registry, Ugeskr Laeger, 174, 42, (2012)

[2]

Louis D.N., Ohgaki H., Wiestler O.D., Cavenee W.K., WHO Classification of Tumours of the Central Nervous System, (2007)

[3]

The Danish Neuro-Oncology Registry

[4]

Pedersen C.B., The Danish civil registration system, Scand J Public Health, 39, 7, pp. 22-25, (2011)

[5]

Schmidt M., Pedersen L., Sorensen H.T., The Danish Civil Registration System as a tool in epidemiology, Eur J Epidemiol, 29, pp. 541-549, (2014)

[6]

Lynge E., Sandegaard J.L., Rebolj M., The Danish National Patient Register, Scand J Public Health, 39, 7, pp. 30-33, (2011)

[7]

NOMESCO Classification of Surgical Procedures. Version 1.15, (2010)

[8]

Erichsen R., Lash T.L., Hamilton-Dutoit S.J., Bjerregaard B., Vyberg M., Pedersen L., Existing data sources for clinical epidemiology: The Danish National Pathology Registry and Data Bank, Clin Epidemiol, 2, pp. 51-56, (2010)

[9]

Bjerregaard B., Larsen O.B., The Danish Pathology Register, Scand J Public Health., 39, 7, pp. 72-74, (2011)

[10]

Fleiss J.L., Levin B., Paik M.C., Statistical Methods for Rates and Proportions, (2003)

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