1. Quality Cancer Data Saves Lives The Vital Role of Cancer Registrars in the Fight against Cancer

2. 18 Million

3. 1.5 million

5. 67%

6. Cancer Registries n Statistics n Treatment strategies n Public health initiatives

7. United States Cancer Statistics 2008

8. Goal The ultimate goal of collecting cancer information is to prevent and control cancer and improve patient care

9. Result Assist physicians in assessing the efficacy of diagnostic and therapeutic methods

10. Result Aid in the decision making about unmet needs, physician recruitment, space needs, resource allocation, and health planning

11. Result Respond to local needs through an assessment of referral patterns, cancer trends, and development opportunities

12. Cancer Registries collect a wide range of cancer-related information; including — n Demographics

13. Cancer-related Information n Medical history n Diagnosis and prognosis indicators n Treatment patterns n Cancer recurrence n Survival rates n Health care coverage n Patient eligibility

14. Different Kinds of Cancer Registries

15. Health care providers record patient information and diagnosis Hospital-based cancer registrar abstracts patient information into uniform data sets and checks for an existing record for each patient Patient data is aggregated on a state level, and then sent to national registries (SEER or NPCR)

16. Hospital Cancer Registry

17. State Cancer Registry

18. National Cancer Data Base http://www.facs.org/cancer/ ncdb/index.html

19. Surveillance Epidemiology and End Results Program (SEER) http://seer.cancer.gov/

20. 1973+ 9 States, 6 Metro Areas 28% of population coverage

21. National Center for Health Statistics Cancer mortality comes from State Health Depts. to the CDC’s NCHS

22. National Program of Cancer Registries

23. NPCR* SEER † NPCR & SEER Pacific Islands Jurisdiction HAWAII PUERTO RICO ALASKA Atlanta Detroit San Francisco/ Oakland Los Angeles San Jose/ Monterey Seattle/Puget Sound CT NM UT IA NJNJ CA LA KY * National Program of Cancer Registries (CDC) † Surveillance, Epidemiology, and End Results Program (NCI)

24. NPCR is expanding efforts to improve and use cancer data by: Providing technical assistance to registries to help ensure data completeness, timeliness, and quality

25. Coordinating and convening meetings of registry personnel for information sharing, problem solving, and training

26. Helping 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

27. Collaborating with federal, state, and private organizations to design and conduct research using data collected through state registries

28. CDC: National Standards n CDC has established national standards to ensure the completeness, timeliness, and quality of Cancer Registry data

29. NPCR provides national leadership to Cancer Registries NAACCR Certified State Registries 2011 Gold Silver Black- did not meet certification requirements

30. Today, NPCR and SEER registries work collaboratively to collect and report cancer statistics on the entire U.S. population. http://www.cdc.gov/cancer/ npcr/uscs/

31. International Association of Cancer Registries

32. How Registries Collect Cancer Data

33. The techniques used by Cancer Registrars allow for uniform data collection. http://www.naaccr.org/

34. Standard setting organizations provide guidance and direction to the Cancer Registrar

35. A patient’s file, or abstract, contains many different sections and fields

36. Abstracting Abstracting is converting a patient’s medical information to uniform cancer data

37. Electronic Medical Records

38. Cancer Registries have embraced technology

39. Cancer Registries exist within a national framework of health monitoring and data collection

40. History of Cancer Information

42. 1629 Cancer recorded as a cause of death 1839 Death registration in the U.S.

43. 1923 First U.S. Cancer Registry launched

44. 1932 First Central State registry – Connecticut 1956 ACoS CoC requires cancer programs to have registries

45. 1971 1974 Nationwide cancer registrations begins National Cancer Act establishes SEER Program

46. 1974 NCRA Chartered 1983 NCRA begins administering CTR examination

47. 1990 NAACCR established

48. 1992 NPCR created by Cancer Registries Amendment Act 1996 ACoS CoC requires data submission to NCDB

49. The Flow of Cancer Information: A Case Study

50. Diagnosis to treatment n Jane Smith learns from her internist that she likely has breast cancer

51. Diagnosis to treatment n Further tests are completed at the hospital

52. Diagnosis to treatment n Jane’s doctor proposes a course of treatment

53. Diagnosis to treatment n Follow-up tests show Jane to be cancer free

54. Diagnosis to treatment n Jane’s data is added to other SEER and Michigan central Cancer Registry data, and the National Cancer Data Base, where it will go through more quality processes and refinement

55. Diagnosis to treatment n The Cancer Registrar will regularly follow- up

56. Cancer Information is Used to Improve Prevention, Research, and Care

57. Evaluate patient outcome, quality of life, and satisfaction issues and implement procedures for improvement Cancer information is used in thousands of ways, including —

58. Evaluate efficacy of treatment modalities

59. Provide outcome information for cancer surveillance http://www.cdc.gov/cancer/ npcr/uscs/

60. http://www.ccrcal.org/pdf/ Reports/Physicians.pdf Report cancer incidence as required by state and federal laws

61. Trends in Five-Year Relative Survival Rates Calculate survival rates by various data items, such as sex, race, and age Male Female Time since diagnosis Number Percent Cummulative Percent Number Percent Cummulative Percent 0 to <5 years2,608,32040% 2,339,95032% 5 to <10 years1,628,01025%65%1,595,41022%54% 10 to <15 years997,06015%80%1,135,16016%70% 15 to <20 years570,2909%89%791,88011%81% 20 to <25 years305,1405%94%536,6707%88% 25 to <30 years154,4702%96%343,3005%92% 30+ years179,010179,0103%3%100%100%499,210499,2107%7%100%100% Estimated Numbers of US Cancer Survivors by Sex and Time Since Diagnosis as of January 1, 2012 Note: Percentages may not sum to 100% due to rounding. Source: Data Modeling Branch, Division of Cancer Control and Population Sciences, National Cancer Institute.

62. Provide information for cancer prevention activities

63. Analyze referral patterns

64. Allocate resources at local, state, and national levels

65. Develop educational programs for health care providers, patients, and the general public

66. Cancer data form much of the body of knowledge used by medical professionals, epidemiologists, policymakers, and public health officials

67. Kentucky Thousands of lives were saved in Kentucky through early detection of breast cancer

68. Arizona Careful analysis leads to broader cancer screening efforts in northeastern Arizona

69. Minnesota In Minnesota, a rare type cancer caused by asbestos exposure was identified, leading the state to look for increased state funding for occupational-related disease

70. Kansas Cancer registry data identified a lack of cancer care facilities

71. New York Cancer registry data are now used to educate New Yorkers about cancer risk factors

72. Cancer Registries and the Fight Against Cancer For more examples of registry data visit the NPCR Web Site http://www.cdc.gov/cance r/npcr/success/index.htm

73. Cancer Registrars Ensure Accuracy and Privacy

74. Inaccurate data is useless, expensive, and often harmful

75. National data is only as good as state and local data Health care providers record patient information and diagnosis Hospital-based cancer registrar abstracts patient information into uniform data sets and checks for an existing record for each patient Patient data is aggregated on a state level, and then sent to national registries (SEER or NPCR)

76. Ensuring accuracy is a team effort

77. Privacy concerns are paramount to Cancer Registrars

78. Cancer Registrars: A challenging career requires quality education, and certification

79. High quality data results from trained specialists: Cancer Registrars

80. Cancer Registrars not only record data, they find and interpret it

81. The Cancer Registrar must have comprehensive knowledge about cancer diagnoses, treatment, and information management

82. Education for Health Information Management Professionals and Cancer Registrars are similar

83. The Cancer Registrar is a key member of health care team

84. Hospital-based Registrar’s Role Goes Beyond Data Collection n Cancer Program Management n Cancer Committee Member n Monitor quality of Cancer Program Management n Provide benchmarks for quality comparison

85. n Data Analysis for Studies n Compiling Cancer Program Annual Report n Assess referral patterns Hospital-based Registrar’s Role Goes Beyond Data Collection

86. n Participate in cancer prevention n Present information to cancer committee, physicians, administration Hospital-based Registrar’s Role Goes Beyond Data Collection

87. n Edit the data from all facilities n Query the database for data quality reports n Merge duplicate records n Audit healthcare facilities to insure accurate, timely, complete data Registrars in Central Cancer Registries are Key Players in Ensuring Quality Health Care

88. n Work with researchers n Contribute to data analysis for cancer program planning n Present data to the local community, schools, and others n Provide education and training for registrars Registrars in Central Cancer Registries are Key Players in Ensuring Quality Health Care

89. How Does One Become a Cancer Registrar?

90. Formal Education Programs Produce Excellent Cancer Registrars

91. CTRs have pursued higher education Some college, associates, bachelors

92. NCRA’s requirements for approval of formal education curricula include: n Cancer and its management n Medical terminology n Anatomy and physiology n Biostatistics and epidemiology n Cancer data abstracting n Database record management n Cancer program management n Cancer registry procedures

93. Other educational opportunities: n Intensive trainings on specific subjects n On-the-job training n Online resources, including NPCR and SEER training modules http://www.training.seer.cancer.gov n SEER Self-Instructional Manuals http://seer.cancer.gov/training/manuals

94. Certification of Cancer Registrars

95. Certification ensures quality results

96. Additional benefits: certification n Establishing a standard of knowledge and competence n Measuring the requisite knowledge, skills and abilities of CTR ® applicants n Promoting professional growth and individual study n Formally recognizing CTRs who meet recertification requirements

97. Candidates who meet eligibility requirements and pass the CTR examination are awarded the CTR credential. NCRA’s Council on Certification sets the certification standards.

98. n Minimum education of an Associate’s degree n Practical experience What are the eligibility requirements for certification?

99. n Successful completion of an NCRA- accredited degree program OR an NCRA-accredited certificate program PLUS an Associate degree or equivalent, AND 160-hour practicum. Route A

100. n Completion of an Associate degree or equivalent (60 college- level credits) including or in addition to two semesters of college-level “Human Anatomy and Physiology” coursework, AND 1,950 hours (equivalent to one year) of Cancer Registry experience. Route B

101. CTR Exam Resources n Council of Certification Website: http://www.ctrexam.org n Eligibility: http://www.ctrexam.org/eligibility

102. CTR Examination Content n Registry organization and operations n Anatomy, physiology, and histology of the human body n Abstracting and coding of cancer data items

103. CTR Examination Content n Statistical techniques, study design and report preparation n Practical application of registry principles n Computerized data management

104. NCRA’s Council on Certification’s Mission n To create and maintain credentialing processes whereby the public can be assured that individuals certified by NCRA have met a level of competence required to provide accurate information for cancer surveillance and research activities

105. In 1983, the National Tumor Registrars Association (now NCRA) administered the first certification examination for tumor registry professionals. NCRA’s Certification Examination

106. Rapidly changing technology and treatment options necessitate continuing education

107. NCRA: Resources for Registrars

108. NCRA represents Cancer Registry professionals and CTRs

109. NCRA Mission Statement n Serve as the premier education, credentialing and advocacy resource for cancer data professionals.

110. NCRA Vision Statement n Improving lives through quality cancer data management

111. NCRA Core Values n Networking, Mentoring, and Making a Difference

112. NCRA offers: n Multiple educational and networking opportunities n Annual national conference to build knowledge and expertise n Promotion of professional standards and ethics

113. NCRA offers: n Management of the CTR process and NCRA’s Council on Certification n Publication of a peer- reviewed scientific journal and a quarterly newsletter

114. NCRA offers: n A Web site offering a wide range of publications and information about educational opportunities n http://www.ncra-usa.org*

115. Cancer Registry is a Dynamic Profession

116. n Registrars are dedicated, enthusiastic, and self motivated professionals n Registrars work closely with physicians and administrators Cancer Registry is a dynamic profession

117. n Registry data make a difference in patient care and cancer research n Registrars perform a wide variety of interesting tasks, including data analysis Cancer Registry is a dynamic profession

118. n The profession offers regular work day hours with holidays and vacations n There is minimal supervision required for self motivated registrars Cancer Registry is a dynamic profession

119. Cancer Registry careers are rewarding Associates Degree Masters Degree $39,000 $55,000

120. Cancer Registrars Have Many Career Opportunities n Hospitals and Health Care Facilities n Software Vendors n Government Agencies n Pharmaceutical Companies n Outsourcing or Contract services

121. You and Cancer Registries: A Smart Choice for a Bright Future