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The Austrian Brain Tumour Registry: a cooperative way to establish a population-based brain tumour registry

  • Clinical Study - Patient Study
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Abstract

In Austria, registration of malignant brain tumours is legally mandatory, whereas benign and borderline tumours are not reported. The Austrian Brain Tumour Registry (ABTR) was initiated under the auspices of the Austrian Society of Neuropathology for the registration of malignant and non-malignant brain tumours. All Austrian neuropathology units involved in brain tumour diagnostics contribute data on primary brain tumours. Non-microscopically verified cases are added by the Austrian National Cancer Registry to ensure a population-based dataset. In 2005, we registered a total of 1,688 newly diagnosed primary brain tumours in a population of 8.2 million inhabitants with an overall age-adjusted incidence rate of 18.1/100,000 person-years. Non-malignant cases constituted 866 cases (51.3%). The incidence rate was higher in females (18.6/100,000) as compared to males (17.8/100,000), while 95/1,688 (5.6%) cases were diagnosed in children (<18 years). The most common histology was meningioma (n = 504, 29.9%) followed by glioblastoma (n = 340, 20.1%) and pituitary adenoma (n = 151, 8.9%). Comparison with the Central Brain Tumor Registry of the United States (CBTRUS) database showed high congruency of findings. The ABTR model led by neuropathologists in collaboration with epidemiologists and the Austrian National Cancer Registry presents a cooperative way to establish a population-based brain tumour registry with high quality data. This setting links cancer registration to the mission of medical practice and research as defined by the World Medical Association in the Declaration of Helsinki. The continued operation of ABTR will aid in monitoring changes in incidence and in identifying regional disease clusters or geographic variations in brain tumour morbidity/mortality.

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Acknowledgments

ABTR is supported by the Anniversary Fund of the Österreichische Nationalbank (project no: 12268). The study is part of the doctoral thesis Brain Tumour Epidemiology in Austria (www.meduniwien.ac.at/clins). The authors are grateful to Andreas Jurkowitsch for IT support, Markus Neumann for support with regard to data confidentiality issues, and Hermann Hayn for legal advice.

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Correspondence to Johannes Andreas Hainfellner.

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Definition of epidemiological terms

Incidence rates: measure the occurrence of newly diagnosed cases of disease within a defined time period. Rates are expressed per 100,000 person-years and age-adjusted to the US 2000 standard population. Age-specific rates are calculated for a subset of a population and describe the rate of disease in defined age groups. Smoothed incidence rates (SIR) are calculated by incorporating population size using random effect models (see "Methods").

Survival rates: are the probability (percentages) of surviving for a specified time period.

Death-certificate-only (DCO) cases: are cancer cases identified only from the death certificate.

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Wöhrer, A., Waldhör, T., Heinzl, H. et al. The Austrian Brain Tumour Registry: a cooperative way to establish a population-based brain tumour registry. J Neurooncol 95, 401–411 (2009). https://doi.org/10.1007/s11060-009-9938-9

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  • DOI: https://doi.org/10.1007/s11060-009-9938-9

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