BTWG Recommendations

The following standard definition is to be used for collecting precise data for all primary intracranial & CNS tumors:

1. Primary intracranial and CNS tumors are all primary tumors occurring in the following sites, irrespective of histologic type or behavior:
   • Brain
   • Meninges
   • Spinal cord
   • Cauda equina
   • Pituitary gland
   • Pineal gland
   • Craniopharyngeal duct
   • Cranial nerves and other parts of the CNS
2. Develop a standard site and histology definition for tabulating estimates of CNS tumors to allow comparability of information across registries. Pathologists, the North American Association of Central Cancer Registries (NAACCR), the Commission on Cancer (COC), the Surveillance, Epidemiology, and End Results (SEER) Program, the National Program of Cancer Registries (NPCR), and the International Agency for Research on Cancer (IARC) need to be involved in developing this standard.
3. All registries, hospital- and population-based, collect data for CNS tumors. This effort will necessitate a change in the COC requirements and will increase costs to the hospital-based programs. Federal funding should be allocated to supplement the additional transition and ongoing data collection costs that will be incurred by central registries. Before additional data collection is implemented, a pilot study should be conducted in multiple states to assess the procedures and quality control functions needed, as well as the costs of collecting data on these tumors.
4. The appropriate government and professional organizations develop and implement special training programs and curricula for central registry, hospital registry, laboratory personnel, and develop computerized edit-checking procedures. Training for reporting and tabulating primary intracranial and CNS tumors should be offered on a regular basis.