U.S. Senator Charles E. Schumer reintroduced The National Childhood Brain Tumor Prevention Network Act, legislation that would require the National Center for Environmental Health at the Centers for Disease Control and Prevention (CDC) to establish a National Childhood Brain Tumor Prevention Network. The new National Childhood Brain Tumor Prevention Network would establish a coordinated research strategy to work towards providing a greater understanding of the causes of childhood brain tumors. Specifically, the national network would aim to establish a standardized study design for investigating factors among children, identify a sufficient patient population to study, and designate a central laboratory to collect, analyze and aggregate the data collected by these studies.
“Although we’ve made great strides in the fight against cancer, we still don’t know enough to effectively fight back against brain tumors in children,” said Schumer. “Too many children have been taken from us, far too early in their lives. To find a cure, we need comprehensive and aggressive studies to unlock new information, so that doctors can move forward with the best plans to treat and beat this disease. I want to thank Mira’s Movement for being passionate and dedicated advocates for such an important cause. I am going to keep fighting to make sure the Centers for Disease Control and Prevention have the direction and the resources they need to play a leading role in the fight against childhood brain tumors. We owe that to the children suffering from this disease, as well as their friends and family.”
“As a mother who had a child diagnosed with a brain tumor at the age of 1, and lost her at the age of 4, I immediately wanted to know why her?” asked Christine Brouwer of Ithaca, Founder and Executive Director of Mira’s Movement, a pediatric cancer support and advocacy organization based in NY, that is working for the passage of the bill. She continued, “How does a 1 year old get brain cancer? I will likely never know the answer to that question for my child, but we can work to find these answers and, hopefully, prevent the same diagnosis of many other children. The impact of childhood brain tumors on the child and their family can’t be overstated. The effects are lifelong.”
Childhood brain tumors are the second most common type of cancer in children, yet the causes of the tumors are largely unknown, according to the American Cancer Society and the National Cancer Institute (NCI). The National Childhood Brain Tumor Prevention Network Act would attempt to address this problem by directing the National Center for Environmental Health at the CDC to establish a national multi-center childhood brain tumor research network. The national network would aim to establish a common study design with standard protocols and procedures to look at a range of factors among children, such as environmental exposure and genetics. The network would also identify a sufficient patient population with childhood brain tumors and compare them with a control group of children across each of the factors identified in the initial study design. Finally, the center would designate a central laboratory to collect, analyze, and aggregate data collected by the study and to make it publicly available to other researchers.
According to the NCI, brain tumors are one of the leading causes of death from cancer in children in the United States today. Despite these statistics, little is understood about the causes of the overwhelming majority of childhood brain tumors. Schumer states it is critically important to reintroduce The National Childhood Brain Tumor Prevention Network Act.
Schumer and his colleagues note that research studies into the causes of childhood brain tumors have been difficult to undertake because brain tumors can vary widely in type and severity, of their impact, depending on the location, appearance and behavior of the tumor. Additionally, research has been complicated further by the fact that each specific tumor type has a relatively low overall incidence rate, making it difficult for any single institution to identify an adequate number of patients with the same tumor. As a result, most research until now has focused on identifying treatments to care for children with brain tumors, and has not focused on trying to identify the factors that cause these tumors in the first place.
Congresswoman Barbara Lee (D-CA) is the sponsor of companion legislation in the House.