our discussion today
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Strengthening Relationships Between SEER and the Michigan Cancer Surveillance Program Carole Eberle, BS, CTR, RHIA, RHIT October 13, 2005 Michigan Cancer Registrars Association Annual Educational Conference Sault St Marie, MI. Our Discussion Today. I. Who We Are - PowerPoint PPT PresentationTRANSCRIPT
Strengthening Relationships Between SEER and the
Michigan Cancer Surveillance Program
Carole Eberle, BS, CTR, RHIA, RHIT
October 13, 2005Michigan Cancer Registrars Association
Annual Educational ConferenceSault St Marie, MI
Our Discussion Today
I. Who We Are
II. We Are All In This Together
III. Our Work IS Important
IV. Let The Games Begin
War Against CancerNational Cancer Act signed into law on
December 23, 1971 by President Nixon
Are We Winning the War? Incredible advances in detection,
prevention and treatment Cancer death rate has been decreasing
steadily Researchers have identified “triggers”
I. Who We Are
Carole Eberle, BS, CTR, RHIA, RHITState/SEER Coordinator
Kari Borden, AA, CTR, RHITQuality Assurance Field Representative
II. We Are All In This TogetherA. Centers for Disease Control (CDC)
National Program of Cancer Registries (NPCR)
B. National Cancer Institute (NCI)Surveillance, Epidemiology
and End Results (SEER) Program
It Starts with YOU!
Hospital/Source
Database
StateNPCR/CDC
Local SEER
NCI
NCDB
A. National Program of Cancer Registries (NPCR)
A program of the Centers for Disease Control (CDC)
STATE
State Cancer Registries are designed to:
Monitor cancer trends over time Determine cancer patterns in various populations Guide planning and evaluation of cancer control
programs (determine whether prevention, screening and treatment efforts are making a difference)
Help set priorities for allocating health resources Advance clinical, epidemologic, and health services
research Provide information for a national database of cancer
incidence
Michigan Cancer Surveillance Program (MCSP)
Operates within the State Department of Community Health
Act No. 82 of 1984 requires the reporting of cancer cases by Michigan licensed hospitals and laboratories
Administrative Rule 325.9053 provides the MCSP with the authority to conduct quality assurance reviews within each reporting entity to ensure consistency and completeness of the statewide cancer incidence registry
MCSP (continued)
It was created to enable the conduct of cancer surveillance activities to monitor trends in the occurrence of cancer
It serves as a resource for researchers investigating epidemiological, etiological and cancer control research questions
NPCR/CDC
Cancer Registries: Essential to Reducing the Cancer Burden
The data collected enable public health professionals to better understand and address the cancer burden
Registry data are critical for targeting programs focused on risk-related behaviors (for ex: tobacco use and exposure to the sun) or environmental risk factors (for ex: radiation and chemical exposures)
Such info is also essential for identifying when and where cancer screening efforts should be enhanced and for monitoring the treatment provided to cancer patients
Reliable registry data are fundamental to a variety of research efforts.
National Program of Cancer Registries (NPCR)
Cancer Registries Amendment Act-Public Law 102-515 enacted in 1992 by the U.S. Congress
Authorizes the CDC to provide funds to: 45 states 3 territories District of Columbia
NPCR--States
NPCRPurpose
to improve existing cancer registries to plan & implement registries where they
do not exist to develop model legislation &
regulations for states to enhance the viability of registry operations
NPCR
Purpose (continued) to set standards for data completeness,
timeliness and quality to provide training for registry
personnel and to help establish a computerized reporting
& data processing system
NPCR
“A national system of cancer registries can help us understand the disease better and use our resources to the best effect in prevention and treatment”
Donna E. Shalala, PhD
Former Secretary, U.S. Department of Health and Human Services
NPCR
“One of the key programs at the CDC is a cancer registry program. Every state has a cancer registry, and that really is our ability to collect the data and analyze it and to understand what kinds of trends are going on in terms of cancer incidence and mortality. Without that data, we really can’t fight the war against cancer. It’s almost as if without registries we go into a war without a map as to where the enemy is.”
Ilisa Halpern, Director of Federal Government Relations for the American Cancer Society
NPCR Collects information on cancer cases
occurring among 96% of the U.S.population Enables CDC to provide valuable feedback to
help state registries improve the quality and usefulness of their data and link with other databases
Makes available regional and national data which facilitates studies in areas such as rare cancers, cancer in children, the quality of cancer care and cancer among specific racial/ethnic minority populations
NPCR--Quality National standards established by CDC to ensure
completeness, timeliness and quality of data To improve quality of cancer registry data and to
use data for cancer control planning, CDC: Provides technical assistance to registries to help
ensure data completeness, timeliness and quality Coordinates and convenes meetings of registry
personnel for information sharing, problem solving and training
Helps states and national organizations use cancer data to describe state and national disease burdens, evaluate cancer control activities and identify populations at risk for certain cancers
Collaborates with federal, state and private organizations to design and conduct research using data collected through state registries
NPCR--Quality
Additionally, in 1997, NAACCR (North American Association of Central Cancer Registries) instituted annual reviews of member registries’ abilities to produce complete, accurate and timely data and awards gold or silver recognition
NAACCR-Certified U.S. Cancer Registries 2003
Collaborative Efforts of CDC--NPCR
Participate in NCCCS Annual Report to the Nation on the
Status of CancerSpecial ProjectsJointly produce annual publications of
Federal Cancer Statistics
B. Surveillance, Epidemiology and End Results (SEER)
A program of the National Cancer Institute (NCI)
SEER—NCI Goals
Assemble and report, on a periodic basis, estimates of cancer incidence and mortality in the U.S.
Monitor annual cancer incidence trends Provide continuing information on changes over
time in extent of disease at diagnosis, trends in therapy and associated changes in patient survival
Promote studies designed to identify factors amenable to cancer control interventions
NCI--SEER Participants
1973 Connecticut, Iowa, New Mexico, Utah, Hawaii, Detroit, SanFrancisco-Oakland, (Puerto-Rico, through
1989) 1974-1975 New Orleans (through 1977), Seattle-Puget
Sound, Atlanta 1978 10 Black, rural counties in Georgia 1980 American Indians in Arizona 1992 Los Angeles and San Jose-
Monterey 1992 Alaskan Natives 2001 Louisiana, Kentucky, New Jersey
(1979-89) , California
SEER Registries
SEER RegistriesSEER Registries
Utah ‘73Iowa ‘73
Detroit ‘73
Connecticut ‘73
Seattle-Puget Sound ‘74
Atlanta ’75
New Jersey ‘01
Kentucky ‘01
Louisiana ‘01
New Mexico ‘73
Arizona ‘80
Alaska ‘92
Hawaii ‘73
San Francisco-Oakland ‘73
Los Angeles ‘ 92
Greater CA ‘01
Rural Georgia ‘78
San Jose-Monterey ‘92
SEER Coverage
Before the most recent expansion, SEER covered 14% of the U.S. population
After 2001 expansion, SEER covers 26% of the U.S. population
SEER database includes information on over 3 million in-situ and invasive cancer cases
Approximately 170,000 new cases per year
Characteristics of SEER Population
C h a ra c te r is t ic s o f th e S E E R P o p u la t io n *C h a ra c te r is t ic s o f th e S E E R P o p u la t io n **b e fo re e x p a n s io n*b e fo re e x p a n s io n
0
1 0
2 0
3 0
4 0
5 0
6 0
7 0
8 0
9 0
%
B e lo wP o v e rty
H S G ra d+
U rb a n F a rm F o re ig nB o rn
S E E RU S
SEER Work Scope Identify and register all cancers (in-situ and
invasive) (except for basal and squamous cell carcinomas of the skin and in-situ cervical cancers—since 1992) diagnosed in residents of the coverage area from: All hospitals All pathology labs which provide cancer diagnostic
services All free-standing medical facilities Offices of physicians where otherwise-unreported
cases can be found
SEER Work Scope Abstract:
Records of resident cancer patients Death certificate cases on which cancer is listed as a
cause of death Search records of private laboratories,
radiotherapy units, nursing homes and other health services units
Record data on newly diagnosed cancers including patient demographics, primary site, morphology, diagnostic confirmation, extent of disease and first course of treatment
SEER Work Scope
Provide active follow up on all living patients
Maintain confidentiality of patient records
Semiannually, submit data electronically to NCI
SEER-NCIAuthority to collect data
SEER activities are conducted by non-profit, medically oriented organizations that have statutory responsibility for registering diagnoses of cancer among residents in their respective geographic coverage areas
Metropolitan Detroit Cancer Surveillance System
(MDCSS) Detroit arm of the SEER program Collects cancer information for the tri-county
area (Wayne, Macomb and Oakland counties)
About 25,000 in-situ and invasive cancers are diagnosed among residents each year
Database includes information on over 531,000 cancer cases
MDCSS accounts for over 44% of the SEER African-American cancer cases
MDCSS (continued)Besides the usual methods of
casefinding, MDCSS has linkage to State of Michigan death certificates with follow-back to hospitals, nursing homes and physician offices. After follow-back, there can be no more than 1.5% of cancers diagnosed only by a death certificate (DCO).
SEER – Follow-up SEER requires current follow-up (within the last 14
months) on 95% of registry cases Other than the usual follow-up sources, there is
linkage with: Voter’s registration records Dept of Motor Vehicle records CMS/HCFA Social Security Administration NDI State of Michigan death certificate records Surveys Lexis/Nexus
Uses of SEER Data Aggregate data, without identifiers, are used
to report cancer incidence and survival by NCI and each SEER area. These data are also available to the public
Identifiable data are available ONLY with approval of the institutions/physicians providing the data
Patient contact for study participation is made ONLY after notifying the patient’s physician
All studies must have IRB approval
On-going Studies at MDCSS Inheritance of Colon Cancer: A Sibling Pair Study – AG Schwartz Genetic Epidemiology of Lung Cancer – AG Schwartz Adenocarcinoma of the Lung in Women - AG Schwartz Genetic Epidemiology of Pancreatic Cancer – J Korczak Luminal Lipid Exposure, Genetics & Colon Cancer Risk – I Kato Does Alternative Medicine Delay Tx of Head and Neck Cancer? – I Kato Patterns of Care 2004 – I Kato Case-Control Study of Renal Cell Cancer among Caucasians & African-Americans
in the US – K Schwartz Assessing the Accuracy of Geocoding – K Schwartz/C Bock Surgical Tx for Early Stage Breast Cancer – S Katz/K Schwartz/JJ Graff Survey of Surgeon’s Knowledge and Attitude Towards Breast Surgery Tx Decisions
– S Katz/K Schwartz/JJ Graff Assessing Smoking and Drinking in the Development of Tongue Cancer and
Evaluation of Quality of Life Following Different Tx Options – A Feasibility Study – JJ Graff
Labor Market Outcomes of Long Term Cancer Survivors – C Bradley/M Schenk Role of Ethnicity in Patients with Primary Malignant Brain Tumors : A Molecular
Epidemiology Pilot – JB Sloan
III. Our Work IS Important
III. Our Work IS Important
Examples of how registries have helped in the “fight against cancer”
Examples of interesting facts about registries
Our Efforts Have Helped High incidence of childhood cancer discovered by
New Jersey Cancer Registry New York State Cancer Registry using mapping
techniques to help public answer questions and concerns about cancer in their communities
In Oregon, the OSCaR (Oregon State Cancer Registry), has developed protocols to address citizens concerns about cancer clusters in that state. This has resulted in the reduction of duplicative efforts among state agencies
Inadequate cancer control services among people with disabilities was found through the Oregon Cancer Registry
State of Maryland Cancer Registry found that 83% of oral cancers are diagnosed by non-dental personnel
Discovery of Disparities in Ethnic Minority Groups
Differences of new invasive cancers per year Lung and bronchial cancers in African-
American men Liver and stomach cancers in Asian/Pacific
Islanders Cervical cancer in Hispanic/Latino females United Farm Workers (UFW) studied in
California
Our Efforts Have Helped In Many Ways
Lung cancer epidemic identified by the Connecticut Tumor Registry
More effective cervical cancer screening guidelines developed because of registry data in Canada
Registry data used in the state of Kentucky to identify areas with late-stage breast cancer
Healthy Kentuckians 2010—health action plan for Kentucky—outcomes of initiatives will be evaluated using cancer incidence data
Risk of breast cancer with increasing alcohol consumption identified through a study by the state cancer registries of Maine, New Hampshire, Massachusetts and Wisconsin
Michigan is investigating bladder cancer relative to arsenic exposure through drinking water
Our Efforts Have Helped
Alaska Native Tumor Registry reported: Cancer was rare for Alaska natives in 1950s Rate has now doubled in last 30 years Cancer is #1 cause of death among Alaskan
natives Causative factors:
Tobacco usage High fat diets Residents believe “agent orange” (used at the time of the
building of the Alaskan pipeline)
Katrina Disaster
Special RegistriesGilda Radner Familial Ovarian Cancer
RegistryNational Familial Pancreas Tumor
Registry Inherited Colorectal Cancer RegistriesUT Southwestern Familial Cancer
RegistryNational Familial Lung Cancer Registry
National Marrow Donor Program registry
U.S. Dept of Health & Human Services
www.hhs.gov/familyhistory
On an International Level International Network for Cancer
Treatment and Research (INCTR)Chernobyl Power-Plant Disaster Hiroshima and NagasakiDanish Cancer RegistryNational Cancer Registry is being
established in Bosnia and Herzegovina
Unusual Items of Interest about Cancer Registries
Tumor Registry established to look at cancer in the Flat-Coated Retriever
Cancer Registries existed in Nazi Germany
IV. Let the Games Begin Two Teams of Three Players A Timekeeper A Scorekeeper Please put away all of the handouts from this
presentation Each Team has One Minute to Answer the
Question before it is passed to the next team If the next team does not answer correctly or within
one minute, then the question goes to the audience Please do not open your prize until you return to
your seat MOST IMPORTANTLY—HAVE FUN!
In what year was the “official” War Against Cancer
declared?
By Whom?
What two major cancer data collection organizations have
we focused on today?
Which of the following are State Cancer Registries
designed to do?Determine Cancer Patterns in Various
PopulationsGuide Planning and Evaluation of
Cancer Control ProgramsHelp Set Priorities for Allocating Health
ResourcesAll of the aboveNone of the above
Cancer Registry data are critical for targeting programs
focused on risk-related behaviors or environmental
risk factors. Name two behavior risk factors and one
environmental risk factor.
Which 5 states are NOT funded by CDC—NPCR and
WHY?
NPCR collects information on cancer cases occurring among 96% of the U.S.
population. TrueFalse
What do the letters NAACCR stand for?
CDC participates in the NCCCS (National Coordinating Council for Cancer Surveillance). Which other
organizations also participate? American Cancer Society (ACS) National Cancer Institute (NCI) NAACCR (North American Association of
Central Cancer Registries) American College of Surgeons (ACoS) National Cancer Registrars Association
(NCRA) American Health Information Management
Association (AHIMA)
Which one of the following reports is a collaborative effort
among the CDC, ACS, NAACCR and NCI?
Adenocarcinoma of the Lung in WomenAssessing the Accuracy of GeocodingAnnual Report to the Nation on the
Status of CancerLabor Market Outcomes of Long Term
Cancer Survivors
In what year were the first SEER Registries started?
Was Detroit one of the founding members?
(Yes or No)
After the 2001 expansion, ___________ covers 26% of
the U.S. Population.(Name which registry this
applies to.)
SEER identifies and collects data on all cancer patients in
the State of Michigan.
TrueFalse
References Centers for Disease Control—National Program
of Cancer Registries www.cdc.gov
Graff, John J. “The SEER Program and the Metropolitan Detroit Cancer Surveillance System”—MDCSS
Copeland, G. State of Michigan Cancer Registry NIH—NCI—SEER Program
www.nih.gov Various internet sites on cancer