Take part in a clinical trial
A clinical trial is an experiment that involves patients in a new way of managing a condition. This might include investigating a new treatment, a new way of giving an existing treatment, or a new approach to diagnosing an illness or assessing an outcome after treatment.
Clinical trials are run because there is belief that the new way may be better than the standard way, and trials are vital to establish whether this is so. There is no guarantee of this, however - clinical trials are experimental by nature and there is a chance that the new way will be no better, or not as good even, as the standard way. Unexpected side-effects are also a possibility, or you may be put into the 'control group', which receives a placebo (dummy drug) or the standard existing treatment, rather than the new treatment.
If you are interested in taking part, or your child taking a part, in a clinical trial, speak to your/your child's health team about trials that may be suitable.
Clinical trials and coronavirus
Those who are already part of a clinical trial will generally continue to be treated, but many clinical trials are now halting recruitment.
If you're already part of a trial
Although there may need to be some adjustments to protocols, those already on a trial will generally continue to be treated. Of course, safety is the top priority.
If, for any reason, a trial can’t continue or you aren't able to remain part of the trial, you will still be given standard care.
You should continue to talk to your doctors or trial team if you have any concerns. Some trial co-ordinators have suggested that email is better, as these are easier to monitor than phone calls when people are working across different sites and emails create a trail.
I want to take part in a clinical trial
Across the UK, recruitment onto trials is being managed on a site-by-site and case-by-case basis, but most trials are halting recruitment to:
- redploy staff to deal with Covid-19 on the frontline
- make research facilities available for tackling Covid-19
- make sure there is sufficient staff to monitor patient safety for those already on trials
- limit the contact between people, especially those who are particularly vulnerable.
The decision to halt recruitment is often being taken by the organisations who own the trial, not the unit/site itself.
It's important to remember that not all trials are halting recruitment and there may be very rare exceptions where a doctor can apply for you to join a trial. So, if you're interested in joining a trial you should still discuss it with your doctor to get the latest advice and information.
Before searching, it is best to have the following information to hand about your/your child's tumour:
- Tumour type
- Tumour grade
- Location of tumour within the brain
- If the tumour is newly diagnosed or recurrent
- Results of any biomarker testing
- Any previous or current treatments for the tumour
- If you have you had to stop any treatments, and why
- Your/your child's age
- Your/your child's general health, including any other medical conditions or any medications being taken.
Finding a clinical trial
Clinical trials take place globally and there are a number of different databases that you can search to see what is available. If you find a trial that you think is suitable, you should speak to your doctor.
Whilst we are unable to recommend any individual clinical trial search platforms, we have heard from our community that they have found the following sites useful.
Global clinical trials databases
Provided by the US National Library of Medicine, it's a database of privately and publicly funded studies around the world, including the UK.
MyTomorrows is a free platform that helps patients and physicians to access drugs that are still in development.
USA clinical trials databases
Provided by the National Brain Tumour Society in the US, it covers trials in the USA only.
Please remember that clinical trials have strict eligibility criteria, which you must meet in order to join the trial.
If you need help with searching for a trial, please speak to your health team about trials that may be suitable for you.