Fifty years ago, a diagnosis of childhood leukemia meant you needed to start planning your child’s funeral. Now it’s got an 85% cure rate, largely due to advances attributed to information gleaned from pediatric clinical trials. Yet those same pediatric cancer trials that are such a treasure trove of data are also causing parents of the sick kids considerable angst.
Unlike adult cancer patients, the majority of pediatric cancer patients — or, more accurately, their parents — are asked to take part in a clinical trial. About 80% of parents accept. (More on Time.com: Fertility Preservation for Young Cancer Patients)
Each year, about 10,000 children are diagnosed with cancer. Although it’s the second leading cause of death for children between the ages of 5 and 14, after accidental injuries, “childhood cancer is a rare disease and the only way we are going to make progress is to be very systematic about the way we do research,” says Steven Joffe, an ethicist and pediatric hematologist/oncologist at Dana-Farber/Children’s Hospital Cancer Center. “The pioneers in the field realized if we don’t make clinical trials an integral part of what we do, we will never make progress.”