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Central Cancer Registries Guide To
Correct Answers
Central Registries' Goals and Objectives incidence surveillance survival surveillance analytic research clinical research patient care surveillance professional education enumeration of caseload statistics for planning community and state outreach and public policy evaluation of cancer control initiatives catchment area the geographic area from which the population source of the central registry is drawn. incidence-only registries does not collect treatment or outcome data determines cancer incidence rates in different groups may also collect data on healthcare providers may support cancer research may also predict cancer caseload
population-based central registries regional, multistate, provincial or national includes all cancer cases in a defined geographic area calculates incidence and mortality rates population is determined by census or related data non-population based central registries multihospital military registry NCDB DoD - AC-TUR NPCR and SEER together collects data for the entire US population major funding sources for US central registries legislative mandates federal and state requires reporting in all 50 states specifies operational requirements provides a process for determining compliance establishes funding Staffing composition and number depends on goals, caseload, nature of data collection process, geographic area and population covered, longevity of the database, managerial and administrative responsibilities, computerization and cancer program functions
NPCR
CoC Uniform Data Standards Committee (UDS) established by NAACCR responsible for data set standardization of CCRs provides formal means for additions and changes standardized data set is found in NAACCR Standards for Cancer Registries, Vol. II: Data Standards and Data Dictionary FORDS Facility Oncology Registry Data Standards Revised for 2010 developed by CoC CoC /ACoS The American College of Surgeons established the Commission on Cancer in 1922 to develop standards for treating cancer AJCC most comprehensive anatomic staging data available Cancer Staging Manual and Cancer Staging Atlas. NCI SEER The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute works to provide information on cancer statistics in an effort to reduce the burden of cancer among the U.S. Population. The Surveillance, Epidemiology, and End Results (SEER) Program of the National
Cancer Institute (NCI) is an authoritative source of information on cancer incidence and survival in the United States. SEER currently collects and publishes cancer incidence and survival data from population-based cancer registries covering approximately 30 percent1 of the US population. For more information on this, please view the SEER Research Data. SEER coverage includes 26 percent of African Americans, 38 percent of Hispanics, 44 percent of American Indians and Alaska Natives, 50 percent of Asians, and 67 percent of Hawaiian/Pacific Islanders. (Details are provided in the table: Number of Persons by Race and Hispanic Ethnicity for SEER Participants.) The SEER Program registries routinely collect data on patient demographics, primary tumor site, tumor morphology and stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and patient survival data. The mortality data reported by SEER are provided by the National Center for Health Statistics. The population data used in calculating cancer rates is obtained periodically from the Census Bureau. Updated annually and provided as a public service in print and electronic formats, SEER data are used by thousands of researchers, clinicians, public health officials, legislators, policymakers, community groups, and the public. NCI staff work with the North American Association of Central Cancer Registries (NAACCR)External Web Site Policy to guide all state registries to achieve data content and compatibility acceptable for pooling data and improving national estimates. The
cancer prevention and control interventions. Monitor the occurrence of possible iatrogenic cancers, i.e., cancers that are caused by cancer therapy. Collaborate with other organizations on cancer surveillance activities, including the CDC's National Program of Cancer Registries and North American Association of Central Cancer Registries (NAACCR)External Web Site Policy. Serve as a research resource to the National Cancer Institute providing for the conduct of studies that address issues dealing with cancer prevention and control as well as Program and registry operations. Provide research resources to the general research community including a research data file each year, and software to facilitate the analysis of the database. Provide training materials and web-based training resources to the cancer registry community. CDC /NPCR Established by Congress through the Cancer Registries Amendment Act in 1992, and administered by CDC, the National Program of Cancer Registries (NPCR) collects data on cancer occurrence (including the type, extent, and location of the cancer), the type of initial treatment, and outcomes. NPCR, CDC supports central cancer registries in 45 states, the District of Columbia, Puerto Rico, and the U.S. Pacific Island Jurisdictions. These data represent 96% of the U.S. population. Cancer registry data are used to:
- monitor cancer trends over time - show cancer patterns in various populations and identify high-risk groups
- guide planning and evaluation of cancer control programs
- help set priorities for allocating health resources
- advance clinical, epidemiologic, and health services research. NCRA Chartered in 1974, the National chartered in 1974 a non-profit organization that represents more than 5,800 cancer registry professionals and Certified Tumor Registrars (CTR®) Its mission is to serve as the premier education, credentialing, and advocacy resource for cancer data professionals. NAACCR
- established in 1987
- establishes and maintains a consensus on standards for cancer registration in North America
- trains and educates cancer surveillance professionals
- certifies registries that achieve data quality standards
- aggregates annual data from population-based registries throughout the U.S. and Canada.
- promotes the use of cancer registry data in surveillance, cancer control, and population-based research. NCCCS
(AJCC) in collaboration with several standard-setting organizations, including the SEER Program. Basic Data Items for CCRs
- patient demographics
- cancer identification
- hospital-specific (admission dates, class and analytic status) data
- stage and prognostic factors
- treatment- first course and subsequent
- follow-up
- death
- edit overrides
- system administration ( case completed, changed)
- patient, hospital and physician
- narrative text Reportable List Every registry must have a ____ ____ of all cases to be included in the registry. Reference Date starting date usually January 1 of a given year on or after all cases diagnosed must be included in the registry Analytic Cases class of case cases that were diagnoses and received their entire first course of treatment at the reporting hospital
circuit rider abstractors who are employed by the central registry to visit reporting facilities and perform casefinding and abstracting of data in the field Timeliness of Reporting SEER - 100% within 20 months of the end of that calendar year NPCR - 90% within 12 months of the close of the diagnosis year and 95% of expected cases within 24 months of the close of the diagnosis year CoC - 6 months from the date of first contact to the time that the data are available for analysis E-path Reporting entire pathology report is scanned for reportable terms that are indicative of cancer and qualifies the report as "potentially reportable" automated, complete and rapid casefinding, transmission and central registry storage requiring little human visual review Death Clearance completed by population-based registries at least annually
- Links all death records from the states vital statistics office to registry records to identify patients that have died. Indicates positive, possible and nonmatches.
- Identifies death records that mention cancer as one of the causes of death but does not link with previously registered cases
