National Program of Cancer Registries

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National Program of Cancer Registries

• Phyllis A. Wingo, PhD, MS
• May 2, 2005

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History of Cancer Registration in the United
States

• 1930's - 1st hospital based registries
• 1941 - Connecticut Cancer Registry
• 1971 - SEER Program
• 1987 - NAACCR
• 1990 - National Cancer Data Base
• 1992 NPCR created by the Cancer Registries
  Amendment Act (Public Law 102-515)

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Surveillance, Epidemiology, and End Results
Program (SEER)

• 1973
• 5 States, 6 Metro Areas
• 14 population coverage
• 2000
• 9 States, 6 Metro Areas
• 26 population coverage

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North American Association of Central Cancer
Registries (NAACCR)

• Develops and promotes consensus uniform data
  standards
• Provides education and training
• Certifies population-based registries
• Aggregates and publishes data from central cancer
  registries, and
• Promotes the uses of cancer surveillance data

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National Cancer Data Base (NCDB)

• Nationwide oncology outcomes data base for 1,600
  hospitals in 50 states
• Approximately one-half of all US cancer cases
  (600,000) are accessioned annually
• Data used for
• Hospital-specific reports
• Community reports
• Scientific reports

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Status of Cancer Surveillance Before NPCR

• No nationwide, population-based cancer
  surveillance in the U.S.
• 10 states did not have a central registry
• Data items/records not standardized
• In most states, no data available for
  planning/evaluation of cancer control activities

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Cancer Registries Amendment Act Public Law
102-515

• Passed by Congress October 1992
• Authorized establishment of National Program of
  Cancer Registries (NPCR) at CDC
• Provide funds to states and territories to
  enhance existing or plan new registries
• Provide training on central registry operations
• Set requirements for funded central registries

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National Program of Cancer Registries (NPCR)

• 1995
• 45 states, 3 territories, District of Columbia
• 96 population coverage

NPCR NPCR/SEER
AK HI
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Cancer Registries Amendment Act Public Law
102-515 Requirements

• Establish statewide, population-based registry
• Develop statewide legislation/regulations
• Comply with standards
• Completeness
• Timeliness
• Quality
• Adopt uniform data elements and uniform record
  format
• Provide statewide annual report

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NPCR Legislation and Regulations

• Authorizing legislation supports existence of
  statewide, population-based registries
• State regulations - Comprehensive reporting
  - Access to records - Reporting of uniform
  data - Protection of confidentiality - Access
  to data by researchers - Authorization to
  conduct research
• - Protection from liability

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NPCR Reportable Cancer Case

• Defined as "each form of invasive cancer with the
  exception of basal cell and squamous cell
  carcinoma of the skin and each form of in situ
  cancer except for carcinoma in situ of the cervix
  uteri"

Cancer Registries Amendment Act NPCR Program
Announcement 426, CDC, 1994 NAACCR subcommittee
report, 1993
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NPCR Data Items

• Demographic Information, including at a minimum
• Name
• Address at diagnosis
• Census tract
• Race and Spanish/Hispanic origin
• Sex
• Birth date
• Social security number

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NPCR Data Items (Continued)

• Clinical Information, including at a minimum
• Date of diagnosis
• Date of admission/first contact
• Source of information
• Date and type of first course of treatment
• Date of death
• Underlying cause of death

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NPCR Data Items (Continued)

• Pathologic Information, including at a minimum
• Primary site
• Morphology Type, behavior, and grade
• Sequence number
• Laterality
• Diagnostic confirmation

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Benign Brain Tumor Cancer Registries Amendment
Act

• Legislation passed October, 2002
• Amendment to the Public Health Service Act
  authorizing NPCR (Cancer Registries Amendment
  Act) to provide for the collection of data on
  benign brain-related tumors
• Implementation Cases diagnosed on or after
  1/1/2004

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NPCR Standards for Completeness

• NPCR endorses the NAACCR method of calculating
  case completeness.
• Within 12 months, 90
• Within 24 months, 95
• of expected, unduplicated cases are available to
  be counted as incident cases.
• - state performs death clearance with 3 or
  fewer cases reported by DCO.
• - 1 or fewer duplicate cases per 1000 records
  are present in the database.

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NPCR Standards for Timeliness

• At the minimum, cancer case reports are received
  by the state cancer registry within six months of
  the diagnosis year from the reporting facility.
• Within 12 months, 90
• Within 24 months, 95
• of unduplicated, expected, malignant cases are
  received by CDC.

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NPCR Standards for Quality

• Within 12 months, 97
• Within 24 months, 99
• of the cases pass an NPCR prescribed set of
  standard data edits.
• NPCR Edits
• - Free distribution
• - For interactive or batch editing
• - Metafiles contain all logic, tables, and
  values to check data validity

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NPCR Standards for Annual Reports

• An accessible and usable analytic database of
  cancer cases that are at least 90 complete
• OR
• A report in electronic format based on cancer
  cases that are at least 90 complete
• that are available by 12 months after the close
  of the diagnosis year.

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United States Cancer Statistics (USCS) 2001

• State, regional, and national data
• Covers 92 of US population
• Rates for whites, blacks, Asians/Pacific
  Islanders (A/PI), Hispanics, and children

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Uses of Cancer Registry Data

• Monitor cancer burden
• Identify cancer incidence variations
• Provide data for research
• Provide guidance for health resource allocation
• Respond to public concern and inquiries about
  cancer
• Evaluation of cancer prevention and control
  activities

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The NPCR Mantra

• Completeness
• Timeliness
• Quality
• Use

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Summary

• Now have strong nationwide cancer registry
  infrastructure in place
• There are population-based cancer registries in
  all 50 states and the District of Columbia.
• For 2001 cancer diagnoses, we have data for 92
  of the U.S. population

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Take-Away Messages
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Web Site

• http//www.cdc.gov/cancer/npcr/