Frequently asked questions about neuro-oncological research and clinical trials.
Frequently asked questions about neuro-oncological research and clinical trials.
If we have a clinical trial that you might be able to take part in, particularly if it might improve your treatment e.g. by allowing you the chance to have a new drug, your consultant will talk to you about this.
If we do not talk to you about entering a clinical trial, this will almost always be because there are no trials open for which you would be eligible (i.e. which is asking questions about your particular tumour type at your particular stage).
Please feel free to ask about research at every part of your journey. Please also be reassured that we are as keen for you to enter a clinical trial as you are, and we will offer you all suitable opportunities.
If a particular trial is open elsewhere in the UK, but not in Manchester, we are happy to discuss referring you to another centre. Similarly, if you are having treatment at another UK centre and would like to talk to us about clinical trial opportunities, we are happy to accept a referral from your consultant or GP.
An overview of the brain tumour clinical trials open in the UK, and the hospitals where they are open, can be found on the NRCI Brain Clinical Subgroup website.
Referral to or from countries outside the UK is not generally possible. Your doctor can discuss this with you if desired.
We would like to be able to offer every patient the chance to take part in a clinical trial. We work hard to be able to offer as many studies as possible to our patients at The Christie. However, there are various reasons why you might not be able to take participate. These include:
To ensure that the findings of research are valid (true), clinical trials have strict eligibility criteria. This means that only patients who fulfil those can be considered for the trial e.g. patients must have a tumour of a particular type and may have to have had no previous treatment, or only one other type of treatment. Patients must also be fit enough to be able to cope with the study medication, which may have more side effects than standard care e.g. an unproven drug which could harm the heart muscle would not be offered to patients who already had heart disease.
It can feel very frustrating to be told that you are not eligible for a clinical trial but it is important to remember that the treatment is in the trial because it is being tested – it may not be any better than standard care and may have more side effects.
When a drug begins to be tested for use in a particular disease, the aim of the first study is often to determine the best dose to use. In this type of study, the first few patients (a cohort) will be treated at a low dose, and then monitored often for several weeks or months, to see how they get on. While they are being monitored, the study is closed to new participants so that no one else is exposed to the drug until doctors are comfortable that it is tolerable. If the first group of patients cope and have manageable side effects, another group of patients (typically 3 patients) is recruited. They receive a higher dose, and the study is closed again while they are monitored. This process continues until the correct dose is identified, but it may mean there are only spaces on the study very intermittently.
This can be very disappointing, particularly if you have been referred from another hospital. All clinical trials have recruitment numbers; once this number has been reached, the study closes and no more patients can be entered. This is to prevent more patients than necessary being exposed to a drug which may not be effective. In popular studies, which are often open at hospitals all over the world, this target number can sometimes be reached very quickly. Again, please try to remember that the reason the drug is in the trial is because its benefits are not proven.
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