Clinical trials
Most children treated for neuroblastoma at one of the specialist childre'’s cancer units in the United Kingdom are offered cancer treatment as part of a clinical trial.
What is a clinical trial?
A clinical trial is a research study involving patients to compare the effects of one treatment with another. Clinical trials are carried out to try and find new and better treatments for cancer, such as a new drug or combination of treatments.
There are many different types of clinical trial which are essential to developing new methods to prevent, detect and treat cancer.
Clinical trials are done for a number of reasons.
Improvements in treatment of the disease have come through clinical trials. These ensure that the effects and outcomes of particular aspects of treatment are measured consistently and reliably over time, to see if one treatment is better than another. This is why improvements are made every year in treating and curing cancer in children.
Clinical trials may also involve the comparison of different treatments where it is not known whether one drug or procedure is more effective than another.
With the small number of children in the UK with neuroblastoma, trials had to run for many years to get statistically valid results. UK treatment centres now take part in European-wide trials that have a much larger number of children in them. This means that conclusions are reached more quickly for the benefit of all children.
Read more: SIOPEN high-risk neuroblastoma clinical trial
What happens before my child is included in a clinical trial?
Before your child is asked to take part in a clinical trial, the treatment team will explain what the trial is aiming to achieve, and the risks and benefits of taking part in it.
Giving your consent
It will only be after you have had the trial fully explained and had time to consider the matter that you will be asked whether you give your consent for your child to take part. If you do agree you will be asked to sign a form giving your informed consent.
The treatment team will not put pressure on you to agree, and your child will receive the best treatment available whatever you decide.
Deciding on whether to take part in a trial can add to the stress of coping with a sick child and the bewildering range of processes associated with treatment.
It may seem as though the treatment team is passing over responsibility for deciding what treatment your child should be given. However, in practice, the treatment team will only invite you to join a trial when it is considered in the best interests of your child and where both you and your child are likely to benefit.
What is a randomised trial?
For some trials, the researchers carry out a process called randomisation. This means a computer will randomly allocate your child to have a particular treatment in the trial.
This is done so that each treatment group has a similar mix of children of different ages, sex and general health. It makes sure that researchers and doctors can’t decide who should get which treatment to avoid bias that could skew the findings.
How safe are clinical trials?
Ensuring the safety of children in clinical trials is the top priority. All trials are approved by ethics and regulatory committees, and they are reviewed on an ongoing basis.
For more information about clinical trials, please download our Parent’s Guide to Neuroblastoma.
In 2019, Neuroblastoma UK joined forces with childhood cancer charities The Bradley Lowery Foundation and Niamh's Next Step to support more vital research into neuroblastoma.