CPCRN Meeting

1. CPCRN Meeting Linda Mulvihill Cancer Surveillance Branch Division of Cancer Prevention and Control October 2009

2. Centers for Disease Control and Prevention Since I am first on the agenda, I’ve added our organizational charts to show you where we are located in the CDC.Since I am first on the agenda, I’ve added our organizational charts to show you where we are located in the CDC.

3. National Center for Chronic Disease Prevention and Health Promotion

4. Division of Cancer Prevention and ControlNational Center for Chronic Disease Prevention and Health Promotion Coordinating Center for Health Promotion Within the Division of Cancer Prevention and Control, there are four branches. The Cancer Surveillance Branch (circled here in red) is home to the National Program of Cancer Registries.Within the Division of Cancer Prevention and Control, there are four branches. The Cancer Surveillance Branch (circled here in red) is home to the National Program of Cancer Registries.

5. Cancer Surveillance BranchHome of the National Program of Cancer Registries The Cancer Surveillance Branch includes 3 teams that support the National Program of Cancer Registries. Operations Research and Technical Assistance Team (which is where I work) works directly with the funded registries. We are responsible for NPCR Program management Quality assurance Education and training Data Analysis and Support Team (Joe Rogers) provides Analytic support for wide range of analyses Cancer registry software for data collection and quality control Informatics research and application to electronic data reporting Surveillance Research Team (Umed Ajani) Design, conduct, and facilitate cancer surveillance research Build capacity among NPCR registries for use of cancer registry data Publication and dissemination of NPCR data The Data Enhancement, Evaluation, and Promotion Activity is a new organizational unit within our Branch. The goal is to Increase dedicated staff for NPCR aggregated data, data quality, and data promotion Increase focus on documentation and review of data quality Develop a data use and quality plan Integrate processes for creating and documenting internal and external data sets Guiding Principle: Evaluate and use the data we have The Cancer Surveillance Branch includes 3 teams that support the National Program of Cancer Registries. Operations Research and Technical Assistance Team (which is where I work) works directly with the funded registries. We are responsible for NPCR Program management Quality assurance Education and training Data Analysis and Support Team (Joe Rogers) provides Analytic support for wide range of analyses Cancer registry software for data collection and quality control Informatics research and application to electronic data reporting Surveillance Research Team (Umed Ajani) Design, conduct, and facilitate cancer surveillance research Build capacity among NPCR registries for use of cancer registry data Publication and dissemination of NPCR data The Data Enhancement, Evaluation, and Promotion Activity is a new organizational unit within our Branch. The goal is to Increase dedicated staff for NPCR aggregated data, data quality, and data promotion Increase focus on documentation and review of data quality Develop a data use and quality plan Integrate processes for creating and documenting internal and external data sets Guiding Principle: Evaluate and use the data we have

6. 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 Ca leading cause of death in US before the age of 85 The Cancer Registry Amendment Act of 1992 not only authorized CDC to establish the National Program but also to set requirements for the central registries funded by the National Program of Cancer Registries. Ca is the only reportable chronic disease and it is the only chronic disease for which we have national incidence data The goal of the central or population based cancer registries is to collect consist, standardized data on all cancer diagnosesCa leading cause of death in US before the age of 85 The Cancer Registry Amendment Act of 1992 not only authorized CDC to establish the National Program but also to set requirements for the central registries funded by the National Program of Cancer Registries. Ca is the only reportable chronic disease and it is the only chronic disease for which we have national incidence data The goal of the central or population based cancer registries is to collect consist, standardized data on all cancer diagnoses

7. 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 The Cancer Registry Amendment Act was further amended in 2002 to provide for the collection of data on benign brain-related tumors for cases diagnosed on or after 1/1/2004. Nonmalignant CNS tumors cause disruption in normal function similar to that caused by malignant CNS tumors and information on these tumors is essential to develop and implement prevention and control activities. The Cancer Registry Amendment Act was further amended in 2002 to provide for the collection of data on benign brain-related tumors for cases diagnosed on or after 1/1/2004. Nonmalignant CNS tumors cause disruption in normal function similar to that caused by malignant CNS tumors and information on these tumors is essential to develop and implement prevention and control activities.

8. National Program of Cancer Registries Before NPCR was established by Congress: NCI’s Surveillance, Epidemiology and End Results Program (SEER) covered 14% of the U.S. population ; With Limited coverage in remaining states Green areas are funded by CDC-NPCR Yellow areas are funded by NCI-SEER Green and Yellow areas represent dual funding from both CDC and NCI. Before NPCR was established by Congress: NCI’s Surveillance, Epidemiology and End Results Program (SEER) covered 14% of the U.S. population ; With Limited coverage in remaining states Green areas are funded by CDC-NPCR Yellow areas are funded by NCI-SEER Green and Yellow areas represent dual funding from both CDC and NCI.

9. 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 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. When combined with the SEER system the entire U.S. population is covered. We have National cancer incidence data to Monitor cancer trends over time nationally and regionally and to Describe cancer patterns in special populations. Complete population coverage allows us to describe and investigate rare cancersA national system of cancer registries can help us understand the disease better and use our resources to the best effect in prevention and treatment. When combined with the SEER system the entire U.S. population is covered. We have National cancer incidence data to Monitor cancer trends over time nationally and regionally and to Describe cancer patterns in special populations. Complete population coverage allows us to describe and investigate rare cancers

10. 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 The CDC-NPCR’s Cancer Surveillance System receives about 1.2 million new invasive cancer cases annually (we do not collect CIS). We have about 13 million invasive cancers in the system, which covers about 96% of the US population Combined with the NCI-SEER program, we cover 100% of the US populationThe CDC-NPCR’s Cancer Surveillance System receives about 1.2 million new invasive cancer cases annually (we do not collect CIS). We have about 13 million invasive cancers in the system, which covers about 96% of the US population Combined with the NCI-SEER program, we cover 100% of the US population

11. Cancer Registry Amendment Act, 1992Public Law 102-515 to set standards for data completeness, timeliness, and quality. As mentioned earlier, Congress established the National Program of Cancer Registries (NPCR) in 1992 by enacting the Cancer Registries Amendment Act, which authorized CDC-NPCR to not only fund state programs, but also: to provide training for registry personnel. to help establish a computerized reporting and data-processing system and To set standards for the data As mentioned earlier, Congress established the National Program of Cancer Registries (NPCR) in 1992 by enacting the Cancer Registries Amendment Act, which authorized CDC-NPCR to not only fund state programs, but also: to provide training for registry personnel. to help establish a computerized reporting and data-processing system and To set standards for the data

12. NPCR Program Standard forElectronic Data Exchange 95% of reports from hospitals 85% from non-hospital reporting sources 75% from physician offices NPCR sets Program Standards for central cancer registries. For example, there are minimum standards for electronic data submissions to the central cancer registry. Most of the data in the US is received at the state registries electronically and all data is received by CDC_NPCR electronically. NPCR sets Program Standards for central cancer registries. For example, there are minimum standards for electronic data submissions to the central cancer registry. Most of the data in the US is received at the state registries electronically and all data is received by CDC_NPCR electronically.

13. Data Flow Cancer Data starts locally and as you can see, travels the world. Accurate data starts at health care facilities………. The national (international) data is only as good as the hospitals and state registries’ data. Cancer Data starts locally and as you can see, travels the world. Accurate data starts at health care facilities………. The national (international) data is only as good as the hospitals and state registries’ data.

14. 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 States use the data for incidence reports for their states, For their cancer control plans, The respond to requests and to asses disease risks, detection and treatmentsStates use the data for incidence reports for their states, For their cancer control plans, The respond to requests and to asses disease risks, detection and treatments

15. National and Regional Data Use NPCR data – CDC submission United States Cancer Statistics, USCS Wonder State Cancer Profiles Report to the Nation Monographs For Cancer surveillance and public health, It’s all about the data The value of surveillance data is in it’s use As I’ve already mentioned, there’s the State and local level data use At the national level, The data allows the Presentation of National statistics Responses to government and public inquiries Investigations of particular cancers; or incidence in special populations; or exposures. The Data are valuable to CDC, partners, Programs, external researchers Following are some examples of the national data use…..there’s <click> For Cancer surveillance and public health, It’s all about the data The value of surveillance data is in it’s use As I’ve already mentioned, there’s the State and local level data use At the national level, The data allows the Presentation of National statistics Responses to government and public inquiries Investigations of particular cancers; or incidence in special populations; or exposures. The Data are valuable to CDC, partners, Programs, external researchers Following are some examples of the national data use…..there’s <click>

16. 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 The United States Cancer Statistics or USCS….. The most recent USCS report to be released later this year, will contain federal statistics for more than 1.2 million cancer cases diagnosed during 2004, covering 98% of the U.S. population. {48 states & DC, excludes Maryland} Mortality data are delayed but if we used last years Incidence to mortality ratios to assess completeness we may have 100% population coverage in USCS for the first time! The United States Cancer Statistics or USCS….. The most recent USCS report to be released later this year, will contain federal statistics for more than 1.2 million cancer cases diagnosed during 2004, covering 98% of the U.S. population. {48 states & DC, excludes Maryland} Mortality data are delayed but if we used last years Incidence to mortality ratios to assess completeness we may have 100% population coverage in USCS for the first time!

17. CDC WONDERWide-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 NPCR data is also used for WONDER or the Wide-ranging Online Data for Epidemiologic ResearchNPCR data is also used for WONDER or the Wide-ranging Online Data for Epidemiologic Research

18. Screen shot of the State Cancer Profiles. National data is provided from NPCR and SEER registries ---Screen shot of the State Cancer Profiles. National data is provided from NPCR and SEER registries ---

19. 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

21. 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 tobacco-related cancers State and regional differences in lung cancer trends Collaboration between CDC, NCI, North American Association of Central Cancer Registries (NAACCR), ACS We work with partner organizations to produce an Annual Report to the Nation on cancer death and incidence rates. 2008 report is the first report to document a decline in cancer rates.We work with partner organizations to produce an Annual Report to the Nation on cancer death and incidence rates. 2008 report is the first report to document a decline in cancer rates.

22. 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 The CDC publication “Morbidity and Mortality Weekly Report” or the MMWR, also uses national cancer data in many of its publications.The CDC publication “Morbidity and Mortality Weekly Report” or the MMWR, also uses national cancer data in many of its publications.

23. 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 HPV-associated cancers of the oral cavity and oropharynx per year National data has been used in several recent monographs. The work on the monographs includes multiple state partners and provides an opportunity for building analysis and data use at the state program level. The monographs’ Focus on a single cancer or population, the focus here is on HPV related cancers and assessing the burden of HPV cancers. Data from NPCR and SEER National data has been used in several recent monographs. The work on the monographs includes multiple state partners and provides an opportunity for building analysis and data use at the state program level. The monographs’ Focus on a single cancer or population, the focus here is on HPV related cancers and assessing the burden of HPV cancers. Data from NPCR and SEER

24. “Cancer in Five Continents”, 1998-2002 Data31 NPCR Registries (83% Population Coverage) Alabama Alaska Arizona California Colorado District of Columbia Florida Georgia Idaho Illinois Indiana Kentucky Louisiana Maine Massachusetts Michigan Missouri Montana New Jersey New York Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina Texas Vermont Washington West Virginia Wisconsin For the first time NPCR data was represented in an international publication. Cancer Incidence in 5 Continents--and we will be submitting data again next year that will hopefully include more of our states. (31 states)For the first time NPCR data was represented in an international publication. Cancer Incidence in 5 Continents--and we will be submitting data again next year that will hopefully include more of our states. (31 states)

25. Enhancement of registry data Linkages National Death Index Insurance claims National Breast and Cervical Cancer Early Detection Program (NBCCEDP) Indian Health Service administrative data Linkage of registry data enhances utility such as the ability to estimate length of survival and assessing cancer by socio-economic characteristics and differences in patterns of care Linkages with other data sets allows us to fill in the gaps in our data (Linkage with the NDI (which provides information on vital status and cause(s) of death) positions state registries to be able to provide relative survival analysis capability.) And Linkage with National Breast and Cervical Cancer Early Detection Program allows both data bases to fill the data gaps: (Can enhance the quality of cancer registry data on diagnosis and stage from NBCCEDP data set ) (Identify cancers missed by state cancer registry or by NBCCEDP ) (Collect or verify data items such as start of treatment by combining two data systems and reconciling differences) We also link with the Indian Health Service Linkage of registry data enhances utility such as the ability to estimate length of survival and assessing cancer by socio-economic characteristics and differences in patterns of care Linkages with other data sets allows us to fill in the gaps in our data (Linkage with the NDI (which provides information on vital status and cause(s) of death) positions state registries to be able to provide relative survival analysis capability.) And Linkage with National Breast and Cervical Cancer Early Detection Program allows both data bases to fill the data gaps: (Can enhance the quality of cancer registry data on diagnosis and stage from NBCCEDP data set ) (Identify cancers missed by state cancer registry or by NBCCEDP ) (Collect or verify data items such as start of treatment by combining two data systems and reconciling differences) We also link with the Indian Health Service

26. NPCR Data Linkage with the Indian Health Service .Example a publication with data from the NPCR/IHS linkage.Example a publication with data from the NPCR/IHS linkage

27. 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

28. 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

29. 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

30. POC- BP Study of treatment patterns and quality of cancer data Third and most comprehensive POC study from CDC-NPCR 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

32. 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

33. Contact Information Linda Mulvihill epe9@cdc.gov 770-488-3246

34. HHS and CDC Collaborations 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 Last two slides are for information only.Last two slides are for information only.

35. 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