At brainstrust everything we do is about improving patient and carer wellbeing. We know that when you’re told you have a brain tumour, the fight has only just begun. This is reflected in our work in brain tumour research.
We get involved in research when it makes a real difference to those living with a brain tumour. Some examples?
Well we’re currently engaged in 15 different clinical trials and research studies.
Helen, brainstrust’s Director of Services, sits on the National Cancer Research Institute (NCRI) Brain Tumour Clinical Studies Group, where her role is to make sure that patients’ views and experiences are considered at all times when a trial is being designed or run. It is all too easy for researchers to otherwise get bogged down in the research, forgetting about the people they’re ultimately doing it for.
As well as this, we are often invited to represent patient voice in other brain tumour research. We take this role very seriously and always make sure we reflect the views of the brain tumour community. It is a heavy responsibility but offers a real way of making things better for brain tumour patients.
Here are just a few examples of what we’re involved in:
- A clinical trial led by the neurosurgical team at Addenbrookes looking at two treatments for glioblastoma patients.
- An investigation at King’s, London to see if patients would prefer to receive routine scan results via the telephone, or in clinic.
- A trial establishing a protocol for epilepsy medication before surgery.
- A trial investigating whether atypical meningiomas should be treated with radiotherapy or observed, at The Walton Centre, Liverpool.
- Research in Edinburgh looking into the Patient Concerns Inventory.
The research is very varied and across many different UK centres. The one thing they have in common is that they are all aimed at improving outcomes for brain tumour patients.
You don’t know it, but every day you help us in this. You share your stories and let us know what’s important to you. We are hugely grateful to you. Thank you also for the times you’ve more obviously helped, by completing a survey, or coming to one of our research focus groups.
We’ll continue speaking up on your behalf and making sure your best interests are always at the heart of research, and don’t forget that you can search all UK brain tumour clinical trials on: www.braintumourhub.org.uk