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 they improve survival. 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 the disease, 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.
Before any UK child is included 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. It will only be after the trial has been fully explained and the parent has had time to consider the matter that informed consent to entering the trial will be requested.
Survival of UK children with neuroblastoma has improved over the past 25 years, through effective clinical trials identifying better forms of treatment. Now two thirds of children can expect to survive 3 years after diagnosis, compared with one in five 20 years ago although, sadly, most of these children will subsequently relapse and die.