Long-term implications of rare brain tumours
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.
Achievements
Ethical approval obtained in 9/9 countries, and 32/32 centers have completed recruitment.
The UK has 10/10 sites open for recruitment
The remaining sites across Europe are at varying stages of obtaining their ethical approval.
The additional 10 sites from France which currently account for 1/3 of recruitment have been a real asset.
Ethical approval has been attained in the UK, France, Germany, Czech Republic, Sweden, Switzerland, Denmark, Italy and Greece.
260 patients recruited so far.
9/9 countries have ethical approval, which include 35/35 sites participating and are completing/ have completed recruitment.
17 centres have been withdrawn from the study (Vienna, Oostende, Regensburg, Freiburg, Bochum, Hannover, The Hague, Utrecht, Maastricht, Rotterdam, Amsterdam, Petah Tikva, Haifa, Barcelona, Hull, Edinburgh, Bristol).
Current status:
Recruitment closed
Future plans
Data Analysis should be completed – September 2023
Decision’s about publications will follow this
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.