Long-term implications of rare brain tumours

Principal investigator(s)
Martin Klein
Amsterdam, Netherlands
, Florien Boele
University of Leeds
Leeds, United Kingdom
Project coordinator(s)
Sé Frances
University of Leeds
Leeds, United Kingdom

Project summary

Patients diagnosed with oligodendroglioma with a specific molecular profile represent rare tumour groups (about 10% of adult gliomas) with relatively favourable prognosis. These patients are often treated with surgery, chemotherapy and/or radiotherapy. As patients live for a long period of time, they may also experience long-term toxic side-effects of treatment. The long-term consequences of treatment- and disease-related factors on quality of life and cognitive functioning of these patients are largely unknown. The aim of this study is to investigate quality of life and cognitive functioning in long-term survivors of oligodendroglioma (with IDH mutation and 1p/19q codeletion). This knowledge can support health care professionals prepare patients for any long-term consequences of treatment.


Ethical approval has been obtained in the UK, Germany, Czech Republic, Switzerland and Greece.

Recruitment is open in 8/11 centres in the UK, 3 sites in Germany, one in Czech Republic and one in Greece, with 14 patients already recruited.

The remaining sites across Europe are at varying stages of obtaining their ethical approval.

We have also managed to recruit an extra 7 sites than originally planned.


Future plans

Recruitment should be completed – February 2023



Please contact us if you would like to join the study as a collaborator.

For patients

We want to research patients that have been diagnosed with a brain tumour called oligodendroglioma. This is a rare type of brain tumour, and many patients continue to live for many years after diagnosis.

People diagnosed with oligodendroglioma are often treated with a combination of surgery, chemotherapy, and/or radiotherapy. Because these brain tumours are so rare, we do not know much about the long-term consequences of the tumour and/or its treatment on patients’ quality of life and memory and concentration (called cognitive functioning).

We want to describe the quality of life and cognitive functioning of people who live a long time with an oligodendroglioma. This can help doctors prepare patients for any long-term consequences of the disease and/or its treatment. It could help us to identify specific areas where more support is needed.