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CPCRN Meeting
Linda Mulvihill
Cancer Surveillance Branch
Division of Cancer Prevention and Control
October 2009
Department of Health and Human Services
Centers for Disease Control and Prevention
Office of the
DIRECTOR
Coordinating Office
for Global Health
Coordinating Office
for Terrorism
Preparedness &
Emergency
Response
Coordinating
Center for
Environmental
Health and Injury
Prevention
Coordinating
Center for Health
Information and
Services
Coordinating
Center for Health
Promotion
Coordinating
Center for
Infectious
Diseases
National Center for
Environmental
Health/Agency for
Toxic Substances &
Disease Registry*
National Center
for Health
Marketing
National Center
on Birth Defects &
Developmental
Disabilities
National Center for
Injury Prevention
and Control
National Center
for Health
Statistics
National Center
for Chronic
Disease
Prevention and
Health Promotion
*ATSDR is an OPDIV within DHHS
but is managed by a common Ofc of
the Director with NCEH
National Center
for Public Health
Informatics
National Institute
for Occupational
Safety and Health
National Center
for Immunization &
Respiratory
Diseases
National Center for
Zoonotic,
Vector-Borne
& Enteric Diseases
National for
HIV/AIDS,
Viral Hepatitis, STD
& TB Prevention
National Center for
Preparedness,
Detection & Control
of Infectious Diseases
National Center for Chronic Disease Prevention
and Health Promotion
Office of the Director
Office of Public
Health Genomics
Division of Heart
Disease and Stroke
Prevention
Associate Director for Science
Associate Director for Policy
Associate Director for
Global Health Promotion
Associate Director for
Communications Science
Associate Director
for Medical Affairs
Associate Director
for Program Development
Division of Adult
and Community
Health
Division of
Adolescent and
School Health
Division of
Cancer
Prevention
and Control
Division of
Diabetes
Translation
Division of Nutrition
and Physical
Activity
Division of
Oral Health
Division of
Reproductive
Health
Office on Smoking
and Health
Division of Cancer Prevention and Control
National Center for Chronic Disease Prevention and Health Promotion
Coordinating Center for Health Promotion
Office of Colorectal
Cancer Programs
Office of Management
And Operations
Office of the Director
Office of Program and
Policy Information
Cancer
Surveillance Branch
Comprehensive Cancer
Control Branch
Epidemiology and
Applied Research Branch
Program Services Branch
Cancer Surveillance Branch
Home of the National Program of Cancer
Registries
Office of the Chief
Christie Eheman
Frances Michaud
Data Enhancement,
Evaluation
and Promotion
Activity
Cheryll Thomas
Operations Research
and
Technical Assistance
Team (ORTAT)
Linda Mulvihill (Acting)
Data Analysis and
Support
Team (DAST)
Joe Rogers
Surveillance Research
Team (SRT)
Umed Ajani
Cancer Surveillance
 Cancer is the leading cause of death in the U.S. before
age 85
 Cancer Registry Amendment Act, 1992, authorized CDC
to establish the National Program of Cancer
Registries (NPCR)
 Cancer is the only reportable chronic disease and the
only chronic disease for which we have national
incidence data
 The goal of central cancer registries is to collect
standardized data on all cancer diagnoses
Benign Brain Tumor Cancer Registries
Amendment Act
 Legislation passed October, 2002
 Amendment to the Public Health Service
Act authorizing NPCR (PL 102-515) to
provide for the collection of data on
benign brain-related tumors
 Implementation: Cases diagnosed on or
after 1/1/2004
National Program of Cancer Registries
NPCR*
Seattle/Puget
Sound
SEER †
NPCR & SEER
Detroit
San
Francisco/
Oakland
San
Jose/
Monterey
CT
IA
N
J
UT
CA
KY
Los
Angeles
NM
Atlanta
LA
HAWAII
ALASKA
*National
REPUBLIC
OF PALAU
Program of Cancer Registries (CDC)
Epidemiology, and End Results Program (NCI)
†Surveillance,
PUERT
O
RICO
VIRGIN
ISLAND
S
Value of National Cancer Surveillance
 Guide planning, implementation, and
evaluation of cancer control programs at a
national, local and state level
 Describe cancer patterns in special
populations and investigate rare cancers
 Identify and document disparities
 Provide data for prioritization of health
resources
 Advance clinical, epidemiologic, and health
services research
Scope of CDC Cancer Surveillance
 Cancer Surveillance System
 Data on approximately 1.2 million new invasive
cancer cases are submitted to CDC each year
 Includes data on approximately 13 million invasive
cancer cases diagnosed during 1995–2005
 96% coverage of U.S. population with NPCR
 100% NPCR and NCI-SEER combined
Cancer Registry Amendment Act, 1992
Public Law 102-515
to set standards for data completeness,
timeliness, and quality.
NPCR Program Standard for
Electronic Data Exchange

95% of reports from hospitals
 85% from non-hospital reporting sources
 75% from physician offices
Data Flow
Health Facilities
States
Local data uses
 State
 State cancer incidence reports
 Comprehensive Cancer Control Plans
 Response to state-level inquiries and
requests
 Assess disease risks, detection, and
treatment locally
National and Regional Data Use
 NPCR data – CDC submission
 United States Cancer Statistics, USCS
 Wonder
 State Cancer Profiles
 Report to the Nation
 Monographs
United States Cancer Statistics
 National cancer statistics
 96% Population Coverage
 Collaboration, CDC, NCI,
NAACCR
 State, regional, and
national data
 Rates for whites, blacks,
Asians/Pacific Islanders
(A/PI), American
Indians/Alaska Natives
(AI/AN), Hispanics, and
children
http://www.cdc.gov/uscs
CDC WONDER
Wide-ranging Online Data for Epidemiologic Research
 Menu-driven system which
provides interactive access to
NPCR data
 Users can obtain reports
containing age-adjusted rates,
crude rates, and case counts.
 Allows greater flexibility in
generating reports than was
previously available.
 http://wonder.cdc.gov/cancer.html
Interactive Cancer Atlas
 Web-based, interactive geographical
information system (GIS) application
 Generates customized maps using data
from the USCS data.
 Displays incidence and death counts and
rates by cancer site, gender, year of
diagnosis, etc.
 Comparisons across geographic areas.
 Using the trend data player, users can see
how the data changed over the years.
 In addition, users can download and print
data for the selected event attributes
Annual Report to the Nation
 Update of death and incidence
cancer rates
 2008 report
 First time report
documented decline in
cancer incidence
 Special focus on tobaccorelated cancers
 State and regional
differences in lung cancer
trends
 Collaboration between CDC,
NCI, North American
Association of Central
Cancer Registries
(NAACCR), ACS
MMWR Surveillance Summary
 Collaboration with Office
of Smoking and Health
 Findings emphasize need
for ongoing surveillance
 Identify populations
at greatest risk
 Evaluate
effectiveness of
targeted tobacco
control programs and
policies
Cancer Monographs
HPV Associated Cancers
 Baseline data to measure the
impact of HPV vaccine and
cervical cancer screening
programs
 More HPV-associated cancers
appear in the cervix than any
other site-about 10,800 a year
 About 7,400 potentially HPVassociated cancers of the oral
cavity and oropharynx per
year
“Cancer in Five Continents”, 1998-2002 Data
31 NPCR Registries (83% Population Coverage)
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Alabama
Alaska
Arizona
California
Colorado
District of Columbia
Florida
Georgia
Idaho
Illinois
Indiana
Kentucky
Louisiana
Maine
Massachusetts
Michigan
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Missouri
Montana
New Jersey
New York
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
Texas
Vermont
Washington
West Virginia
Wisconsin
Enhancement of registry data
 Linkages
 National Death Index
 Insurance claims
 National Breast and Cervical Cancer
Early Detection Program (NBCCEDP)
 Indian Health Service administrative
data
NPCR
Data Linkage with the
Indian Health Service
Source: Native Women’s
Breast and Cervical Health,
August 2002
Artist: Virgil "Smoker"
Marchand (Washington State
Colville American Indian)
Patterns of Care (PoC)
Studies
 Institute of Medicine, 2000
“NPCR …has great potential to facilitate
national, population-based assessments
of the quality of cancer care …”
 NPCR initiated patterns of care studies in
2002-03

Enhance capacity of NPCR registries
to use registry data to assess cancer
care

Breast

Prostate

Colon

Ovary
POC -1
 Initiated in 2003
 Data collection ended in 2006
 To date from the study group:

Several publications
 Nine oral presentations
 Four posters
 Additional manuscripts are in preparation
Ovarian PoC
 Determine first course of treatment received

Specialty of treating physicians
 Treatment outcomes

1- and 3- year survival
 Re-abstraction of charts
 Information collected

Patient
 Tumor
 Treatment
 Physicians/Facilities
 Determine what proportion of patients received
standard of care
POC- BP
 Study of treatment patterns and quality of cancer data
 Third and most comprehensive POC study from CDCNPCR
 Involves cancer registries in seven states

CA (two regional), GA, KY, LA, NC, MN, WI
 Approximately 28,000 patients
 Data collection has ended
 Data is being cleaned and analytic dataset being
prepared for analyses
Research /Surveillance Research
 Annual Report to the Nation
 Surveillance Summary - MMWR
 Monographs
 An update on cancer in American
Indian/Alaska Native
 Assessing the burden of HPV-associated
cancers in the United States
 POC studies
 Other research papers
 Cancer in five continents
Contact Information
Linda Mulvihill
[email protected]
770-488-3246
HHS and CDC Collaborations
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National Breast and Cervical Early Detection Program
National Comprehensive Cancer Control Program
Office of Smoking and Health (NCCDPHP)
Office of Women’s Health
Division of Sexually Transmitted Disease Prevention
Division of Oral Health
National Center for Environmental Health
National Center for Health Statistics
National Cancer Institute
Agency for Health Care Research and Quality
National Center for Public Health Informatics
Agency for Toxic Substance and Disease Registry
Indian Health Service
External Collaborations
 National Cancer Registrars Association
 American Cancer Society
 American Joint Committee on Cancer
 Central Brain Tumor Registry of the United
States
 College of American Pathologists
 North American Association of Central Cancer
Registries