Our Discussion Today

1. Strengthening Relationships Between SEER and the Michigan Cancer Surveillance ProgramCarole Eberle, BS, CTR, RHIA, RHITOctober 13, 2005Michigan Cancer Registrars AssociationAnnual Educational ConferenceSault St Marie, MI

2. Our Discussion Today • I. Who We Are • II. We Are All In This Together • III. Our Work IS Important • IV. Let The Games Begin

3. War Against Cancer • National 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”

4. I. Who We Are • Carole Eberle, BS, CTR, RHIA, RHIT State/SEER Coordinator • eberlec@michigan.gov • Kari Borden, AA, CTR, RHIT Quality Assurance Field Representative • bordenk@michigan.gov

5. II. We Are All In This Together • A. Centers for Disease Control (CDC) National Program of Cancer Registries (NPCR) • B. National Cancer Institute (NCI) Surveillance, Epidemiology and End Results (SEER) Program

6. It Starts with YOU! Hospital/ Source Database State NPCR/ CDC NCI Local SEER NCDB

7. A. National Program of Cancer Registries (NPCR) A program of the Centers for Disease Control (CDC)

8. STATE

9. 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

10. 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

11. 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

12. NPCR/CDC

13. 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 riskfactors (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.

14. 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

15. NPCR--States

16. NPCR • Purpose • 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. NPCR--Quality • Additionally, in 1997, NAACCR (North American Association of Central CancerRegistries) instituted annual reviews of member registries’ abilities to produce complete, accurate and timely data and awards gold or silver recognition

23. NAACCR-Certified U.S. Cancer Registries 2003

24. Collaborative Efforts of CDC--NPCR • Participate in NCCCS • Annual Report to the Nation on the Status of Cancer • Special Projects • Jointly produce annual publications of Federal Cancer Statistics

25. B. Surveillance, Epidemiology and End Results (SEER) A program of the National Cancer Institute (NCI)

26. 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

27. 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

28. SEER Registries

29. 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

30. Characteristics of SEER Population

31. 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

32. 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

33. SEER Work Scope • Provide active follow up on all living patients • Maintain confidentiality of patient records • Semiannually, submit data electronically to NCI

34. 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

35. 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

36. 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).

37. 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

38. 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

39. 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

40. III. Our Work IS Important

41. III. Our Work IS Important • Examples of how registries have helped in the “fight against cancer” • Examples of interesting facts about registries

42. 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

43. 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

44. 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

45. 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

46. Special Registries • Gilda Radner Familial Ovarian Cancer Registry • National Familial Pancreas Tumor Registry • Inherited Colorectal Cancer Registries • UT Southwestern Familial Cancer Registry • National Familial Lung Cancer Registry

47. National Marrow Donor Program registry

48. U.S. Dept of Health & Human Services www.hhs.gov/familyhistory

49. On an International Level • International Network for Cancer Treatment and Research (INCTR) • Chernobyl Power-Plant Disaster • Hiroshima and Nagasaki • Danish Cancer Registry • National Cancer Registry is being established in Bosnia and Herzegovina

50. 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