History of CNS Tumor Surveillance & Registration


Central Brain Tumor Registry of the United States (CBTRUS) formed to report population-based data on primary benign, borderline, and malignant central nervous system (CNS) tumors


National Coordinating Council on Cancer Surveillance (NCCCS) formed Brain Tumor Working Group (BTWG) to explore the feasibility of registering non-malignant CNS tumors


BTWG forwarded 4 recommendations to the NCCCS. NCCCS accepted recommendations 1 and 2 and deferred recommendations 3 and 4.


At the annual meeting of the Society for Neuro-Oncology, a consensus conference was convened. The group agreed with the site definition in recommendation 1 of the BTWG Report. They agreed to the development of a standard site and histology definition based on the SEER site/histology validation list. They discussed differences in definition of CNS tumors between the surveillance community and the neuropathology clinical community. For example, the clinicians wanted lymphomas of the brain included with brain tumors. Brain lymphomas have always been collected by registries, but the incidence is tabulated with lymphoma not with brain. All involved recognized the importance of continuing the dialogue between the clinical community and the surveillance community.


In 2001 the Coordinating Council met and accepted recommendations 1 and 2 as complete. They reconvened the BTWG and asked them to work on recommendations 3 and 4.

At the request of the BTWG in January 2003, NAACCR established a Benign Brain Tumor subcommittee of their Registry Operations Committee. The subcommittee was to develop procedure guidelines needed in registry operations when non-malignant CNS tumors were included in data collection efforts.

Concurrently, the North American Brain Tumor Coalition along with brain tumor activists brought the issue of collection benign brain tumors to Congress. Representative Barbara Lee (D-CA) introduced HR 239, Benign Brain Tumor Bill, "to amend the Public Health service Act to provide for the collection of data on benign brain-related tumors through the National Program of Cancer Registries". CDC legislative staff worked with Representative Lee and the brain tumor community to insure that the BTWG definition found in Recommendation 1 was the definition included in the legislative language of the bill. A senate bill was drafted by Senator Jack Reed (D-RI). In October 2002, President Bush signed public law 107-260, the benign brain tumor cancer registries amendment act.


Both SEER and COC agreed to make reporting of non-malignant brain tumors a requirement with a common implementation date for cases diagnosed January 1, 2004 and later.