KSSG Collaborative Brain Tumour Registry
Scheduled · 2020 until 2025
Zeitlberger Anna, Hundsberger Thomas
Primary brain tumours remain an important burden of disease in Switzerland. Between 2010 – 2014, there were 1570 incident cases and about 580 deaths attributed to brain tumours each year. Although tumours of the central nervous system (CNS) represent a relatively small percentage of tumours on a global scale, they are associated with a significant morbidity and mortality. Due to their poor prognosis and higher incidence in younger patients, it has been estimated that malignant brain tumours alone cause about 4,800 potential years of life lost per anno in Switzerland. This is comparable to more common forms of tumours. Moreover, affected patients face an array of unique challenges affecting their quality of life, often rendering them in need of specialised care. Thus it is not surprising that the effect of brain tumours on the health-care systems is out of proportion with their incidence.
While there is a global need for new treatments against brain tumours, there are many challenges that need to be overcome. Tumours located in eloquent areas of the brain may be difficult to access and resect completely without causing significant neurological deficits. However, in recent years, there has been encouraging evidence showing that the combination of awake craniotomies and comprehensive intraoperative monitoring may improve neurological outcome. To date, however, publications almost exclusively consists of retrospective data analysis. Furthermore, the potential benefit of this technique on overall survival compared to craniotomy under general anaesthesia has yet to be determined. In terms of systemic treatments, the blood-brain barrier as well as unique biological factors of neural tissue and the immune system render these tumours resistant to most conventional and novel treatment agents.
In an attempt to address these challenges, there has been a global movement to establish population-based registries that prospectively collect clinical, demographic and molecular genetic data from neuro- oncological patients. This has proven to be a productive development in the field both in terms of optimising clinical practice as well as in producing significant research output.
This project aims to design and implement a comprehensive, multidisciplinary assessment of neuro-oncological patients treated at the KSSG. The proposed KSSG Collaborative Brain Tumour Registry will serve as an organised system that uses observational study methods to uniformly collect demographic, surgical, molecular-genetic and oncological data.