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DATA COLLECTION OF PRIMARY CENTRAL NERVOUS SYSTEM AND INTRACRANIAL TUMORS

DATA COLLECTION OF PRIMARY CENTRAL NERVOUS SYSTEM AND INTRACRANIAL TUMORS. TAKEHOME MESSAGE. NONMALIGNANT CNS TUMORS REQUIRED TO BE ACCESSIONED, ABSTRACTED, REPORTED AND FOLLOWED STANDARD SITE/HISTOLOGY DEFINITION NEW RULES LATERALITY MULTIPLE PRIMARIES.

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DATA COLLECTION OF PRIMARY CENTRAL NERVOUS SYSTEM AND INTRACRANIAL TUMORS

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  1. DATA COLLECTION OF PRIMARY CENTRAL NERVOUS SYSTEM AND INTRACRANIAL TUMORS

  2. TAKEHOME MESSAGE NONMALIGNANT CNS TUMORS REQUIRED TO BE ACCESSIONED, ABSTRACTED, REPORTED AND FOLLOWED STANDARD SITE/HISTOLOGY DEFINITION NEW RULES LATERALITY MULTIPLE PRIMARIES

  3. Data Collection of Primary Central Nervous System Tumors DEPARTMENT OF HEALTH AND HUMAN SERVICES CENTERS FOR DISEASE CONTROL AND PREVENTION Atlanta, Georgia, USA

  4. Portions of this presentation are based on nonmalignant CNS tumor data collection rules adopted by the North American Association of Central Cancer Registries (NAACCR) Uniform Data Standards Committee - June 2003.

  5. Part I • Casefinding History Definition of Reportable Cases Anticipated Impact on Registries

  6. Rationale for Nonmalignant CNS Tumor Surveillance and Registration • Nonmalignant CNS tumors cause disruption in normal function similar to that caused by malignant CNS tumors • Location of a CNS tumor is as important as tumor behavior (benign or malignant) on morbidity and mortality

  7. History 1992 -1996 • 1992 – Central Brain Tumor Registry of the United States (CBTRUS) formed to report population-based data on primary benign, borderline, and malignant central nervous system tumors • 1996 – National Coordinating Council on Cancer Surveillance (NCCCS) formed Brain Tumor Working Group (BTWG) to explore the feasibility of registering nonmalignantCNS tumors

  8. History 1998 • BTWG forwarded 4 recommendations to the NCCCS • NCCCS Accepted recommendations 1 and 2 Deferred recommendations 3 and 4

  9. BTWG Recommendations • The following standard definition is to be used for collecting precise data for all primary intracranial and CNS tumors: 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

  10. BTWG Recommendations • Develop a standard site and histology definition for tabulating estimates of CNS tumors to allow comparability of information across registries • All registries, hospital- and population-based, collect data for primary CNS tumors

  11. BTWG Recommendations • Develop training for reporting and tabulating primary intracranial and CNS tumors and develop computerized edit checking procedures

  12. History 2000 • 2000 • ICD-O-3 and WHO 2000 Brain Tumor Classification are compatible • November 2000 • Consensus conference on brain tumor definition convened. Group agrees to: • Site definition as in recommendation 1 • Need to develop a standard site and histology definition based on the SEER site/histology validation list

  13. History 2001-2002 • 2001 – NCCCS • Accepted recommendations 1 and 2 as complete • Reconvened the BTWG to work on recommendations 3 and 4 • 2002 – NAACCR established subcommittee of Registry Operations Committee • Identify changes needed in registry operations for inclusion of nonmalignant CNS tumors • October 2002 – Benign Brain Tumor Cancer Registries Amendment Act (public law 107-260) signed by President Bush

  14. History 2003 • 2003 – SEER-supported registries and COC-approved hospital cancer registries will also report nonmalignant CNS tumors diagnosed January 1, 2004 forward

  15. Impact of Collecting Nonmalignant CNS Tumors • Annual increase in number of cases estimated by doubling the number of malignant CNS cases diagnosed in the same year • Increase in hospital registry case load will be dependent on the type of hospital • Community hospitals with small or no neurology service will likely experience a small increase in case load • Hospitals with a large neurology service will likely experience a larger increase

  16. Impact of Collecting Nonmalignant CNS Tumors • Central registry case load is estimated to increase by 1% • In 2002, 21 state cancer registries collect nonmalignant CNS tumors • Minimal impact if registry’s definition for brain-related sites is same

  17. Impact of Collecting Nonmalignant CNS Tumors • Central registries adding nonmalignant CNS tumors to reportable case definition • May have to change reporting law if law does not allow for collection of nonmalignant cases • All cancer registries • Have same definition for brain-related tumors • Implement data edits created for nonmalignant CNS tumors • Report rates for these tumors

  18. Reportable Brain-Related Tumors • Public Law 107-260 requires reporting of brain-related tumors • The term ‘brain-related tumor’ means a listed primary tumor (whether malignant or benign) occurring in any of the following sites: (I) The brain, meninges, spinal cord, cauda equina, a cranial nerve or nerves, or any other part of the central nervous system (II) The pituitary gland, pineal gland, or craniopharyngeal duct

  19. Reportable Brain-related Tumors • Brain • Cerebrum (C71.0) • Frontal lobe (C71.1) • Temporal lobe (C71.2) • Parietal lobe (C71.3) • Occipital lobe (C71.4)

  20. Reportable Brain-Related Tumors • Brain (continued) • Ventricle (C71.5) • Cerebellum (C71.6) • Brain stem (C71.7) • Overlapping lesion of the brain (C71.8) • Brain NOS (C71.9)

  21. Reportable Brain-Related Tumors • Meninges • Cerebral meninges (C70.0) • Spinal meninges (C70.1) • Meninges NOS (C70.9) • Spinal cord (C72.0) • Cauda equina (C72.1)

  22. Reportable Brain-Related Tumors • Cranial nerves • Olfactory nerve (C72.2) • Optic nerve (C72.3) • Acoustic nerve (C72.4) • Cranial nerve NOS (C72.5)

  23. Reportable Brain-Related Tumors • Other CNS (C72.8, C72.9) • Pituitary gland (C75.1) • Craniopharyngeal duct (C75.2) • Pineal gland (C75.3) • For the sites described, benign, borderline, and malignant tumors are reportable for cases diagnosed January 1, 2004 forward

  24. Casefinding • Additional or expanded case finding mechanisms • Pathology • Radiology • Treatment facilities • Radiation oncology centers/departments • Gamma/cyber knife center

  25. Casefinding • Disease indices • Surgery logs • Diagnostic imaging • Radiation oncology • Neurology clinics • Medical oncology • Autopsy reports

  26. Casefinding Sources • Freestanding radiation therapy centers • Freestanding MRI centers • Freestanding gamma/cyber knife centers • Freestanding oncology centers • Data exchange with other central registries • Death clearance process

  27. ICD-9-CM Codes for Casefinding

  28. Unusual and Ambiguous Terminology • If the final pathologic diagnosis is a CNS neoplasm or mass, there must be an ICD-O-3 histology code for the case to be reportable • Hypodense mass or cystic neoplasm are not reportable even for CNS sites. • A benign meningioma with a skull site should be coded to the cerebral meninges (C70.1).

  29. Part II • CNS Anatomy and Function • Histologies and Primary Sites • Grading Systems and Coding Grade

  30. CNS Functional Anatomy URL: www.solinas.com/solinas/brain.html 7/18/03

  31. CNS Anatomy C71.0 C75.3 C75.1 C71.6 C71 C71.7 C71.7 C72.0 URL: www.universalpeace.ca/principles.htm 7/18/03

  32. Intracranial Sites Parietal lobe C41.0 C71.0 Frontal lobe C71.6 C71.7 C72.0 URL: mscenter.ucsf.edu/faq.htm 7/18/03

  33. Cerebrum C71.0 C71.3 C71.1 C71.4 C71.2 C71.6 C71.7 URL: www.sciencebob.com/lab/bodyzone/brainprint.html 7/18/03

  34. Cerebellum, Brain Stem C71.0 C71.3 C71.1 C71.4 C71.6 C71.2 C71.7 URL: www.sciencebob.com/lab/bodyzone/brain.html 7/18/03

  35. Pineal and Pituitary Glands C75.3 C71.6 C75.1 C71.7 C72.0 URL: training.seer.cancer.gov/module_anatomy/unit6_3_endo_gl… 7/18/03

  36. Cranial Nerves I=C72.2, II=C72.3, VIII=C72.4, Others=C72.5 URL: faculty.washington.edu/chudler/cranial.html 7/18/03

  37. Meninges C71.0 C70.0 C70.0 URL: www.cardioliving.com/consumer/Stroke/Hemorrhagic_Stroke.sht 7/18/03

  38. Tentorium C70.0 C70.0 URL: neurosurgery.mgh.harvard.edu/abta/primer.htm 7/18/03

  39. Spinal Cord C70.1 C72.0 URL: www.merck.com/pubs/mmanual/figures/182fig1.htm 7/18/03

  40. Cellular Classification • Neuroepithelial tumors • Astrocytomas • Oligodendroglioma • Ependymomas • Pineal parenchymal tumors • Other CNS tumors • Sellar tumors • Hematopoetic tumors • Germ cell tumors • Meningiomas • Tumors of cranial nerves

  41. Glial Tumors • Glial tissue: supportive tissue of brain made up of astrocytes and oligodendrocytes • Glial tumors assigned ICD-O-3 histology codes from glioma series • Codes 938 through 948

  42. Glial Tumors • Astrocytic tumors • Noninfiltrating • Juvenile pilocytic (M9421) • Subependymal (M9383) • Infiltrating • Well-differentiated mildly and moderately anaplastic astrocytoma (M9401) • Anaplastic astrocytoma • Glioblastoma multiforme (M9440) • Brain stem gliomas (M9380)

  43. Glial Tumors • Ependymal tumors • Myxopapillary and well-differentiated ependymoma (M9394) • Anaplastic ependymoma (M9392) • Ependymoblastoma (M9392) • Oligodendroglial tumors • Well-differentiated oligodendroglioma (M9450) • Anaplastic oligodendroglioma (M9451)

  44. Glial Tumors • Mixed tumors • Mixed astrocytoma-ependymoma • Mixed astrocytoma-oligodendroglioma • Mixed astrocytoma-ependymoma-oligodendroglioma • Other Gliomas • Ganglioneuromas (M9490) • Optic Nerve Gliomas

  45. Non-Glial Tumors • Pineal region tumors • Parenchymal tumors • Pineocytoma (M9361) • Pineoblastoma (M9362) • Pineal Astrocytoma (M9400) • Germ cell tumors • Germinoma (M9064) • Embryonal carcinoma (M9070) • Choriocarcinoma (M9100) • Teratoma (M9080)

  46. Non-Glial Tumors • Meningiomas • Meningioma: Benign (M953_) • Malignant meningiomas • Anaplastic meningioma • Hemangiopericytoma (M9150) • Papillary meningioma (M9538) • Choroid plexus tumors • Choroid plexus papilloma (M9390) • Choroid plexus carcinoma • Choroid plexus meningioma (M9538)

  47. Other CNS Tumors • Craniopharyngioma (M9350) • Rathke Pouch tumor • Chordomas (M9370) • Schwannoma (M9560) • Acoustic Schwannoma/Neuroma

  48. Other CNS Tumors • Embryonal tumors • Retinoblastoma (M9510) • Primitive neuroectodermal tumors (PNET) • Meduloblastoma (M9470) • Neuroblastoma (M9500)

  49. Other CNS Tumors • Lymphoma (M9590) • Arise from • Indigenous brainhistiocytes (microglia) • Rare lymphocytes in meninges • High incidence in patients with AIDS • Vascular tumors • Rare, nonmalignant tumors • Arise from blood vessels of brain and spinal cord • Hemangioblastoma (M9161) most common vascular tumor

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