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Data Sources-Cancer

Data Sources-Cancer . Betsy A. Kohler, MPH, CTR Director, Cancer Epidemiology Services New Jersey Department of Health and Senior Services. Cancer Registry Data collection on all cancer cases Supported by State, CDC (NPCR) and NCI (SEER) Award-winning,world-class registry

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Data Sources-Cancer

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  1. Data Sources-Cancer Betsy A. Kohler, MPH, CTR Director, Cancer Epidemiology Services New Jersey Department of Health and Senior Services

  2. Cancer Registry Data collection on all cancer cases Supported by State, CDC (NPCR) and NCI (SEER) Award-winning,world-class registry Nearly 25 years of continuous data collection, over one million cases Cancer Surveillance Serves as data support and report generation for Registry Supported by State, Federal, Private Funds Cancer Epidemiology Research Projects (15) (HIPAA) Over 100 peer reviewed research studies Cancer cluster evaluation Cancer Epidemiology Services

  3. Cancer Surveillance and Response to Community Cancer Concerns • “Public Health Surveillance is the mechanism that public health agencies use to monitor the health of their communities. Its purpose is to provide a factual basis from which agencies can appropriately set priorities, plan programs, and take actions to promote and protect the public health” • USDHS, Principles of Epidemiology, 1992

  4. Use of Public Health Surveillance Data- • Surveillance data can be used for public health action, program planning and evaluation, and formulating research hypotheses • Measure burden of disease (incidence, mortality) • Monitor trends (stage) • Guide planning and evaluation of programs (screening) • Detect changes in health practices (treatment) • Prioritize health resource allocation • Describe clinical course (survival) • Provide basis for epidemiologic research

  5. Timeliness of Surveillance Systems • Immediate- BT, SARS, Controlling Outbreaks • Annual-evaluating magnitude of problems, assessing effectiveness of control measures, setting research priorities, facilitating planning, monitoring risk factors • Archival-monitoring natural history of disease, trends • Stroup, et al

  6. Strengths PH Importance Usefulness Flexibility Data Quality Acceptability Consistent Case Definition Stability Weaknesses Simplicity Flexibility Timeliness Evaluation-Cancer Surveillance as Public Health Surveillance System Source: MMWR 7/01 German,, et. al

  7. New Jersey State Cancer Registry • Continuous data collection since 10/1/78 • Over one million cases on file • Largest cancer resource for the State • Reporting is required by law • Reciprocal reporting agreements • National awards for timeliness, accuracy and completeness of data

  8. What type of data are collected? • Demographics • Age • Race (White, Black, API, others) • Ethnicity • Gender • Residence at Diagnosis • Annual vital status is monitored

  9. Medical Data • Primary site (where did the cancer originate) • Type of cancer (histology) • Date of Diagnosis • Stage at Diagnosis ( how far it has spread) • Indicator variable for screening practice • New cancer primaries (not metastatic sites)

  10. Treatment Information • First course of treatment for each primary cancer is recorded • Surgery, radiation, hormone, other • First few months, or planned course of therapy • Does NOT include ALL therapy • Would require extra work to evaluate for access to care issues

  11. County Level Data • Data not generally released on geographic level lower than county • Specificity of address data not always sufficient • Reliability • Confidentiality • Not always relevant

  12. Cancer Registry Data • Help identify the cancer burden • How many cases? • What types of cancer are most common in our county? • What are the disparities in our county? • Comparison to other counties, state(s), nation possible when using age-adjusted rates with common standard

  13. Assess and Evaluate Cancer Programs • What percentage of patients are diagnosed at early stages? (Surrogate for screening) • Differences by race? Age? • Use in conjunction with other data • Behavioral Risk Factor Surveillance System • Census data • Others

  14. Set Priorities, Plan Programs Evaluate Data driven decisions are essential to setting priorities! Tailor programs to the needs of your county Use data to support your conclusions Future data will be used to measure the effectiveness of programs instituted today.

  15. Obtaining Data • Meeting to develop set of standard data reports for each county • Will provide information in standard way to facilitate interpretation. • Will be distributed by Dr. Sass/Dr. Weiss • They will address questions and assist in interpretation.

  16. But I want it NOW! • Go to http://cancercontrolplanet.gov • Most recent county data for New Jersey for major cancer control sites • Mortality data available here too • Graphics, interpretation, comparisons • IT’S GREAT

  17. Web Resources • www.naaccr.org • Cancer Registry Statistics • www.state.nj.us/health/cancer/statistics • http://web.facs.org/ncdbbmr/ncdbbenchmarks.cfm • For all major cancer control sites—Treatment data

  18. Other Web Resources • NCI • www.cancer.gov/cancer_information • http://seer.cancer.gov • CDC • www.cdc.gov/cancer • ACS • www.cancer.org

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