Senator Charles Schumer from New York has reintroduced the “National Childhood Brain Tumor Prevention Network Act” (S 1052) to require the CDC National Center for Environmental Health to establish the multi-center childhood brain tumor research network. The Network would establish a standardized study design to investigate factors among children, identify a sufficient patient population to study, and designate a central laboratory to collect, analyze, and aggregate the data collected to make it publicly available to other researchers.
Schumer and his colleagues note that research studies on the cause 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 since 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 type of 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 the tumors in the first place.
With the Network, researchers would be able to look at a range of factors among children such as environmental exposure and genetics and children with brain tumors could also be compared with a control group of children.
The legislation would provide grants for five year duration to fund the research. The grants would be funded for $25,000,000 for FY years 2012 through 2016. To be eligible, a consortium would need to demonstrate the capability to annually enroll a minimum of 100 individuals with a newly diagnosed childhood brain tumor, enroll research participants with childhood brain tumors, plus look at children without brain tumors but are matched demographically.
(S 1052) has been referred to the Senate Committee on Health, Education, Labor, and Pensions. Congresswoman Barbara Lee from California and Congressman Rob Bishop from Utah are sponsoring the companion bill (H.R 1970) in the House which has been referred to the House Committee on Energy and Commerce.