United States Cancer Registries

1
United States Cancer Registries

• FDA Meeting of Pediatric Subcommittee of the
  Anti-Infective Drugs Advisory Committee
• October 30, 2003
• Phyllis A. Wingo, PhD, MS

2
Outline of Presentation

• Cancer registry programs in the United States
• Data available
• Data quality issues
• United States Cancer Statistics (USCS), including
  childhood cancers
• Follow-up
• Summary

3

• Cancer Registry Programs in the
• United States

4
History of Cancer Registration in the United
States

• 1930's -First hospital based registries
• 1941 - Connecticut Cancer Registry
• 1971 - SEER Program
• 1987 - NAACCR
• 1990 - National Cancer Data Base
• 1992 - National Program of Cancer Registries
• 2000 - CDC and NCI Memorandum of Understanding
• 2002 - United States Cancer Statistics

5
Surveillance Epidemiology and End Results (SEER)
Program

• NCI
• 1973
• 9 States and 6 metropolitan areas
• 26 population coverage

SEER SEER/NPCR (2000)
AK HI
6
National Program of Cancer Registries (NPCR)

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

NPCR NPCR/SEER
AK HI
7
Cancer Registries Amendment Act (PL 102-515)

• Passed by Congress October 1992
• Authorized establishment of National Program of
  Cancer Registries (NPCR)
• Set requirements for funded central registries

8
Requirements of Cancer Registries Amendment Act

• Statewide, population-based registry
• Statewide legislation/regulations
• Compliance with standards
• Completeness
• Timeliness
• Quality
• Uniform data elements, uniform format
• Statewide annual report

9
Legislation and Regulations

• Authorizing legislation supports existence of
  central 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

10

• Data available in
• population-based registries in the United States

11
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"

12
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

13
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 definitive
  treatment (surgery)
• Date of death
• Underlying cause of death

14
Data Items (Continued)

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

15

• Data Quality Issues

16
NPCR Standards for Completeness

• Standard processes for measuring completeness
• Case sharing with all bordering states
• Case reporting from all facilities providing
  cancer screening, diagnosis, and treatment
• Case finding audits
• Death clearance and follow-back
• Duplicate records protocol

17
NPCR Standards for Timeliness

• Standard data items for measuring timeliness
• Dates case report
• sent to central registry
• received by central registry
• loaded into central registry database
• Date tumor record available in central registry

18
NPCR Standards for Completeness and Timeliness

• Within 24 months,
• 0.1 of records are duplicates
• 90 of unduplicated, expected, malignant cases
  within 12 months
• 95 of unduplicated, expected, malignant cases
  within 24 months

19
NPCR Standard for Quality

• Within 12 months of the close of the dx year, 97
  of the cases pass an NPCR prescribed set of
  standard data edits.
• Within 24 months of the close of the dx year, 99
  of the cases pass an NPCR prescribed set of
  standard data edits.

20
North American Association of Central Cancer
Registries (NAACCR)

• Uniform data standards for cancer registration
• Education and training
• Certification
• Data publication
• Data use

21
NAACCR-Certified State Cancer Registries by
Year of Data Submission
1997
1998
2002
2000
North American Association of Central Cancer
Registries
22

• United States Cancer Statistics, 2000 Incidence

23
Joint Publication of National, Regional, and
State Cancer Incidence Data

• United States Cancer Statistics (USCS)
• 2000 incidence data
• Crude and age-adjusted rates per 100,000
• 95 CI
• 84 population coverage

24
USCS Eligibility Criteria

• High quality data
• 90 completeness of case ascertainment
• 97 records pass EDITS
• 41 statewide and 6 metropolitan area cancer
  registries met criteria

25
Registry Programs Meeting Quality Criteria 2000
Seattle/Puget Sound
WA
ME
MT
ND
MN
VT
OR
NH
WI
ID
MI
SD
NY
MA
WY
CT
Detroit
RI
PN
IA
San Francisco/Oakland
NE
NJ
NV
OH
IN
UT
IL
DE
MD
San Jose/ Monterey
CO
WV
VA
DC
KS
MO
CA
KY
Los Angeles
NC
TN
OK
AZ
SC
NM
AR
Atlanta
MS
AL
GA
LA
TX
AK
REPUBLIC of Palau
FL
HAWAII
PUERTO RICO
7
26
USCS - Content

• Section 1 National cancer incidence data by
  site, sex and race
• 84 coverage US population
• 84 White
• 81 Black
• 91 Asian / Pacific Islander
• 1 million new cases
• 10,000 new cases among children 0-19 years old
• Section 2
• Section 3

27
Invasive Cancer Incidence Rates for the 15
Primary Sites with the Highest Age-Adjusted
Incidence Rates, United States, 2000

Males, All Races
Prostate
160.4
Lung Bronchus
87.9
Colon Rectum
65.0
Urinary Bladder
37.8
Non-Hodgkin Lymphoma
21.6
Melanomas of the Skin
19.4
Kidney Renal Pelvis
16.4
Oral Cavity Pharynx
15.7
Leukemias
14.5
Pancreas
12.1
Stomach
10.5
Esophagus
8.5
Larynx
7.8
Brain ONS
7.7
Liver IBD
7.4
0
50
100
150
200
250
300
Rate per 100,000
28
Invasive Cancer Incidence Rates for the 15
Primary Sites with the Highest Age-Adjusted
Incidence Rates, United States, 2000
Females, All Races
Breast
128.9
Lung Bronchus
52.5
Colon Rectum
47.0
Corpus Uterus, NOS
23.5
Ovary
15.8
Non-Hodgkin Lymphoma
15.4
Melanomas of the Skin
12.4
Thyroid
10.7
Urinary Bladder
9.8
Pancreas
9.5
Cervix Uteri
9.2
Leukemias
8.7
Kidney Renal Pelvis
8.4
Oral Cavity Pharynx
6.0
Brain ONS
5.5
0
50
100
150
200
250
300
Rate per 100,000
29
Lymphoma Incidence Rates by Sex, United States,
2000
Age-adjusted rates (2000) per 100,000
30
Invasive Skin Cancer Incidence Rates by Sex,
United States, 2000
Age-adjusted rates (2000) per 100,000 Excluding
basal and squamous cell skin cancer
31
Invasive Cancer Incidence Rates for Childhood
Cancers, by Sex, Ages 0-19, 2000
Age-adjusted rates (2000) per 1,000,000
32
Invasive Cancer Incidence Rates for Childhood
Cancers, by Sex, Ages 0-19, 2000
Age-adjusted rates (2000) per 1,000,000
33
USCS - Content

• Section 1 National cancer incidence data by
  site, sex and race
• Section 2 Cancer incidence data by states,
  census division, sex and race
• Regions 80 population coverage
• Pacific 100,
• Mt. 100
• W.N. Central 96
• E.N. Central 100
• Mid. Atlantic 100
• New England 91
• South 57
• Section 3

34
(No Transcript)
35
USCS - Content

• Section 1 National cancer incidence data by
  site, sex and race
• Section 2 Cancer incidence data by states,
  census division, sex and race for the leading 20
  sites males, 29 sites females
• Section 3 State-specific cancer incidence rates
  ranked within sex and race for the leading 15
  sites

36

• Follow-up in Population-Based Registries in the
  United States

37
Follow-up to Determine Vital Status

• To confirm deaths among cancer patients, all
  NPCR and SEER registries link with
• State death certificates files
• Social security files
• National Death Index (NDI)

38
Follow-up to Determine Vital Status

• To confirm alive status among cancer patients,
  all SEER (9 states) and selected NPCR registries
  (very few) link with
• Social security files
• Hospital discharge data
• Medicare (CMS)
• Voter registration
• Motor vehicle registration
• Other

39
Summary

• Population-based cancer registries in all 50
  states and the District of Columbia.
• CTQ varies across states
• Follow-up good for death status, limited for
  alive status

40
Summary

• Strong nationwide cancer registry infrastructure
  in place
• Data available at national, regional, state and
  local levels for
• Monitoring burden of disease
• Planning comprehensive cancer control programs
• Conducting special research studies

41

• www.cdc.gov/cancer/npcr

42
Future Plans

• Expand population-based coverage
• Include other racial and ethnic groups
• Estimated of case counts at the national and
  regional levels
• Trend data
• Pediatric cancers
• Mortality data

43
Frequency DistributionAges 0-19, 2000
44
Frequency Distribution, continuedAges 0-19, 2000
45
Lymphoma and Reticuloendothelial Neopl, 2000
Age-Specific and Age-Adjusted Incidence Rates
Rates are per 1,000,000 and are age-adjusted to
the 2000 US standard population
46
Acute Lymphocytic Leukemia, 2000Age-Specific and
Age-Adjusted Incidence Rates
0-04
Rates are per 1,000,000 and are age-adjusted to
the 2000 US standard population