111^th Congress

National Childhood Brain Tumor Prevention Network Act

H.R. 653/S. 305

Background

According to congressional findings, brain tumors are the second most common type of cancer in children and are the leading cause of death from solid tumors in children. Because very little is known about the causes of many childhood brain tumors, the sponsors introduced this legislation to require the National Cancer Institute (NCI) to establish a dedicated network to focus on this aspect of research.

NCI, a component of the National Institutes of Health (NIH), is the primary NIH Institute through which the conduct and support of pediatric brain tumor research takes place. NCI programs span the continuum of cancer research, from basic scientific discovery to behavioral science to quality care and survivorship to patient access. NCI’s support of basic scientific discoveries, translational research, targeted drug development, and clinical trials, along with population and behavioral research studies, are the foundation for the National Cancer Program. This infrastructure, organized around an extensive network of university-based cancer centers and community-based programs, enables research in prevention, early diagnosis, treatment, and care for cancer patients and those who care for them.

Pediatric brain cancer research spans multiple NIH Institutes and Centers (ICs), including the National Institute of Neurological Disorders and Stroke, National Institute of Biomedical Imaging and Bioengineering, and Office of Rare Diseases (ORD). Together with NCI, these ICs developed the NIH Research Plan for Children’s Brain Tumors coordinated by the Trans-NIH Brain Tumor Working Group. The ICs named above also facilitate the coordination and collaboration of organizations to advance pediatric brain tumor research. One example is the Brain Tumor Epidemiology Consortium, which was created by NCI and ORD to foster the development of international, multicenter, and interdisciplinary collaborations focused on studying brain tumor etiology, prevention, and outcomes.

Provisions of the Legislation/Impact on NIH

A Sense of the Congress is included in the legislation, stating that 1) there is a need to establish a multicenter research effort based on collaboration between regional consortia in order to comprehensively study the causes of childhood brain tumors and identify potential risk factors; 2) there is a need to encourage a collaborative effort among surgical and medical centers with epidemiological study groups to gather comprehensive and detailed information for each child enrolled in those groups, in order to investigate environmental, nutritional, genetic, and developmental factors with respect to, and the pathological and epidemiological characteristics of, childhood brain tumors; and 3) there is a need to authorize the Director of NIH to coordinate national research efforts of governmental and nongovernmental entities with respect to childhood brain tumors.

This legislation would amend the Public Health Service Act to require the Director of NIH, acting through the Director of NCI, to establish a National Childhood Brain Tumor Prevention Network grant program. The purpose of the network would be to conduct research on the causes of and risk factors for childhood brain tumors. The legislation would also designate a central laboratory to collect research data and assemble a panel of experts to provide guidance and recommendations to develop the following: 1) a common study design; 2) standard protocols, methods, procedures, and assays for collecting from individuals enrolled as study participants and the parents of these individuals; 3) specific analytical methods for examining data; 4) provisions for the consensus review of enrolled cases; and 5) an integrated data collection network.

Finally, the legislation would authorize appropriations of $25 million for each of the fiscal years 2010–2014.

Status and Outlook

H.R. 653 was introduced by Representative Barbara Lee (D-CA) on January 22, 2009, and was referred to the House Committee on Energy and Commerce. No further action has occurred on this legislation.

S. 305 was introduced by Senator Charles E. Schumer (D-NY) on January 22, 2009, and was referred to the Senate Committee on Health, Education, Labor and Pensions. No further action has occurred on this legislation.

September 2009