Clinical trials for Childhood Cancer drugs are critical

After a child is diagnosed with cancer, the physician will discuss treatment options and the possibility of participating in a clinical trial with the child's parents. If the parents choose for their child to participate, they will sign a written consent document provided by the organization coordinating the trial. Parents have to decide relatively quickly if their child will participate in the trial so that treatment can begin. If parents opt out of the trial, the child receives treatment similar or identical to that offered in the standard arm of the trial.
Children in these clinical trials are randomly assigned by a computer to receive either the standard treatment or the experimental treatment. Neither the physician who is enrolling the patient nor the researchers in charge of the study have any input into which arm a particular child will end up on. Unfortunately, previous research demonstrates that parents struggle to understand how their child will be assigned to the standard arm or the experimental arm.
Phase III clinical trials compare a new treatment with an established one, to look for differences in survival rates and side effects between the two treatments. These differences are unknown at the start of the trial to everyone involved. This is called clinical equipoise and it is the foundation of the research design.
Parents often struggle with the fact that the physicians do not know which treatment is better. We are frequently asked to "do what is best for my child," but we do not know which arm of the study will be better, making it impossible for us to guide the parents. Some parents are comforted that the treatment arm their child is assigned to is randomly assigned and that the better outcome is unknown so that they do not have to make a decision. Others find the uncertainty disconcerting.