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The ARISTOCRAT clinical trial – perspective from a patient advocate

Peter Buckle is a patient advocate and has worked with several teams, including the ARISTOCRAT team to champion research and clinical trials.

Guest blog from Peter Buckle. Peter tells his story and explains why he thinks the ARISTOCRAT clinical trial is so important.

We’ve funded this trial which aims to offer those with recurrent glioblastoma a treatment option when there are very few treatment options available.

Peter and Wendy

My wife Wendy (pictured above on our last holiday in French Polynesia) died from a glioblastoma some years ago. We had never heard of this disease. I now know that, although relatively rare, anyone diagnosed with a glioblastoma is likely to experience a heavy ‘burden of disease’, both from the tumour progression and from the side effects of treatments.

It is a disease that is very resistant to current treatment and the survival outlook for most patients is, frankly, likely to be bleak. The search for new and better treatments therefore is so very important.

ARISTOCRAT involvement

It is for this reason that I became involved, as a patient advocate, with research into new treatments for glioblastoma. As such I was a ‘co-applicant’ for the ARISTOCRAT trial, and I am a member of the Trial Management Group. This group meets regularly on-line to manage and track the progress of the trial. Along with one other member, who lost her husband to glioblastoma, we try to ensure that the voice of the patient is always represented in the light of our experiences.

ARISTOCRAT- first cannabinoid trial for brain tumours

The reason why I am so enthusiastic about this trial is firstly, because there are so few new treatments worldwide for this disease, and secondly because there is reason to be cautiously optimistic that some patients may indeed benefit from becoming involved with the trial. It is the first trial of a cannabinoid in a controlled setting for brain tumours.

Having passed successfully through the regulatory ‘hoops’, mainly to ensure the safety of the trial, a number of neuro-oncology centres in the UK have started to recruit patients into the trial.

We know that not all glioblastomas are identical, so not every patient diagnosed with one will meet the eligibility rules for the trial. Your oncologist will tell you if you are eligible – and therefore you may get an invitation to join. If so, what should you do?

Taking part in ARISTOCRAT

My recommendation is that you should get as much information as possible, and consider very carefully how you want to respond to the invitation – and discuss it with your close family. I understand all too well that you may at this stage of your illness be experiencing some ill-health. There is no evidence that this treatment will worsen this.

If you do decide to enter the trial, which I hope you will, you may not only get some benefit for yourself, but you will also be contributing to the gaining of wider knowledge about this disease, which may help others in the future.

One final point. Not every hospital can be involved in this trial. If your oncologist has not invited you to join, this may be because as an individual patient you do not qualify – or it may be because your local hospital is not involved in the trial. In this situation, if you are able and willing to travel, your doctor should be able to refer you to the next nearest centre for you to be treated there.