Brain Tumor Working Group

The mission of the National Coordinating Council for Cancer Surveillance (NCCCS), established in 1995, is to coordinate cancer surveillance activities within the United States through communication and collaboration among major national cancer organizations. The NCCCS helps ensure that the needs of cancer patients and the communities in which they live are served fully; that scarce resources are used maximally; and that the burden of cancer in the United States is measured adequately and ultimately reduced. This organization was created to provide a forum for examining the current state of cancer surveillance operations, identify the broad issues involved, recommend practical approaches that will facilitate the work of cancer registries, and contribute to the goal of coordinating data collection and improving data quality across the nation. The Council enables member organizations to collaborate on cancer monitoring and registry operations. NCCCS members include—

• American Cancer Society
• American College of Surgeons
• American Joint Committee on Cancer
• Centers for Disease Control and Prevention's National Program of Cancer Registries
• National Cancer Institute's Surveillance, Epidemiology and End Results Program
• National Cancer Registrars Association
• North American Association of Central Cancer Registries

NCCCS established the Brain Tumor Working Group to investigate the feasibility of reporting benign brain tumors in central cancer registries in the United States. In 1998, this Working Group submitted its first report to the NCCCS: Surveillance of Intracranial and Central Nervous System Tumors: Recommendations from the Brain Tumor Working Group [PDF-573KB].

The most recent progress report, presented to the NCCCS in June 2004, summarizes the accomplishments of the Brain Tumor Working Group from 2001 through 2004, including the activities leading to the implementation of reporting benign brain tumors in the United States in January 2004. The National Coordinating Council for Cancer Surveillance Brain Tumor Working Group 2004 Report [PDF-122KB] provides information about the passage of the Benign Brain Tumor Cancer Registries Amendment Act, [PDF-185KB] which mandates the National Program of Cancer Registries to collect incidence data on benign brain tumors, along with the development and approval of cancer registry reporting rules and educational materials.