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The Danish Neuro-Oncology Registry

View Article: PubMed Central - PubMed

ABSTRACT

Aim of database: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark.

Study population: DNOR has registered clinical data on diagnostics and treatment of all adult patients diagnosed with glioma since January 1, 2009, which numbers approximately 400 patients each year.

Main variables: The database contains information about symptoms, presurgical magnetic resonance imaging (MRI) characteristics, performance status, surgical procedures, residual tumor on postsurgical MRI, postsurgical complications, diagnostic and histology codes, radiotherapy, and chemotherapy.

Descriptive data: DNOR publishes annual reports on descriptive data. During the period of registration, postoperative MRI is performed in a higher proportion of the patients (Indicator II), and a higher proportion of patients have no residual tumor after surgical resection of the primary tumor (Indicator IV). Further data are available in the annual reports. The indicators reflect only minor elements of handling brain tumor patients. Another advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group.

Conclusion: The establishment of DNOR has optimized the quality in handling primary brain tumor patients in Denmark by reporting indicators and facilitating a better multidisciplinary collaboration at a national level. DNOR provides a valuable resource for research.

No MeSH data available.


Data model of the Danish Neuro-Oncology Registry.
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f1-clep-8-629: Data model of the Danish Neuro-Oncology Registry.

Mentions: Data are registered in four different forms linked in a hierarchical data model (Figure 1). The forms including data on diagnostic and surgery are entered by the Department of Neurosurgery and the forms including data on chemotherapy and radiotherapy are entered by the Department of Oncology. The data are transferred to an analytical database which can describe the clinical course of the patients and administrative issues. Using the unique ten-digit code given to all Danish citizens, the analytical database is further linked to the Danish Civil Registration System5 to obtain residence and vital status.


The Danish Neuro-Oncology Registry
Data model of the Danish Neuro-Oncology Registry.
© Copyright Policy
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC5094636&req=5

f1-clep-8-629: Data model of the Danish Neuro-Oncology Registry.
Mentions: Data are registered in four different forms linked in a hierarchical data model (Figure 1). The forms including data on diagnostic and surgery are entered by the Department of Neurosurgery and the forms including data on chemotherapy and radiotherapy are entered by the Department of Oncology. The data are transferred to an analytical database which can describe the clinical course of the patients and administrative issues. Using the unique ten-digit code given to all Danish citizens, the analytical database is further linked to the Danish Civil Registration System5 to obtain residence and vital status.

View Article: PubMed Central - PubMed

ABSTRACT

Aim of database: The Danish Neuro-Oncology Registry (DNOR) was established by the Danish Neuro-Oncology Group as a national clinical database. It was established for the purpose of supporting research and development in adult patients with primary brain tumors in Denmark.

Study population: DNOR has registered clinical data on diagnostics and treatment of all adult patients diagnosed with glioma since January 1, 2009, which numbers approximately 400 patients each year.

Main variables: The database contains information about symptoms, presurgical magnetic resonance imaging (MRI) characteristics, performance status, surgical procedures, residual tumor on postsurgical MRI, postsurgical complications, diagnostic and histology codes, radiotherapy, and chemotherapy.

Descriptive data: DNOR publishes annual reports on descriptive data. During the period of registration, postoperative MRI is performed in a higher proportion of the patients (Indicator II), and a higher proportion of patients have no residual tumor after surgical resection of the primary tumor (Indicator IV). Further data are available in the annual reports. The indicators reflect only minor elements of handling brain tumor patients. Another advantage of reporting indicators is the related multidisciplinary discussions giving a better understanding of what actually is going on, thereby facilitating the work on adjusting the national guidelines in the Danish Neuro-Oncology Group.

Conclusion: The establishment of DNOR has optimized the quality in handling primary brain tumor patients in Denmark by reporting indicators and facilitating a better multidisciplinary collaboration at a national level. DNOR provides a valuable resource for research.

No MeSH data available.