Surveillance, Epidemiology and End Results (SEER)

Grants and Contracts Details


The Kentucky Cancer Registry (KCR) began as a voluntary reporting system in 1986. In April of 1990, the State General Assembly passed legislation that formally established KCR as the population-based central cancer registry for the Commonwealth. The legislation provided recurring funding for staff, travel, and computer equipment. KCR carefully redesigned and implemented the statewide system using the Surveillance Epidemiology and End Results (SEER) program as a model. This included using SEER coding definitions and reporting requirements. Mandatory reporting to KCR officially began January 1, 1991. All Kentucky acute care hospitals and their associated outpatient facilities are required to report each case of cancer using the Cancer Patient Data Management System (CPDMS) developed by KCR. The larger hospitals (those diagnosing or treating more than 100 new primary cancer cases annually) are required to have their own tumor registrar(s). These larger hospitals are divided into three geographic regions. Three Regional Coordinators are employed by KCR to work with the larger institutions to ensure the quality, accuracy, and timeliness of the data reported. All hospital-based registrars are required to attend extensive formal training programs before they begin abstracting cases. KCR Regional Coordinators spend one day each month in each of these larger facilities providing additional training, re-abstracting cases for quality control, and helping the hospital-based registrars prepare reports from the data. The smaller hospitals (those diagnosing or treating fewer than 100 new primary cancer cases annually) are also divided into regions and assigned to one of four Regional Abstractors employed by KCR. Regional Abstractors record and report information on all cases of cancer seen in these smaller institutions. KCR Regional Coordinators and Regional Abstractors are required to be Certified Tumor Registrars (CTRs) or become CTRs within two years following their date of employment. In 1994, the legislation requiring reporting of cancer cases (KRS 214.556, Appendix 1) was modified to include reporting from all health care facilities that either diagnose or treat cancer patients. These additional facilities include freestanding treatment centers, non-hospital (private) pathology laboratories, and physician offices. In this same year, KCR received funding from the Centers for Disease Control and Prevention (CDC) through the National Program of Cancer Registries (NPCR). This additional funding allowed KCR to institute a quality assurance program, implement death clearance follow back, and hire staff to ensure that cases of cancer were systematically reported by non-hospital facilities. In 2000, KCR was selected as one of four Surveillance Epidemiology and End Results (SEER) expansion registries. Participation in the SEER program provided the resources to expand and improve the KCR quality assurance program, and to ensure complete reporting from all sources. Participation in the SEER program also gave KCR the opportunity to significantly improve the accuracy and completeness of follow-up information on all cancer patients in the Registry. KCR currently collects uniform, high quality data that meet SEER standards for approximately 24,500 new primary cancer cases occurring in Kentucky residents each year. Since joining the SEER program, KCR has participated in a number of quality assurance/quality control activities including three SEER casefinding audits and six reliability studies. The casefinding audits have formally documented the completeness of case ascertainment in Kentucky. KCR also performed well in the SEER reliability studies. KCR currently meets or exceeds all of the SEER standards for data quality, completeness, and timeliness. In addition, data from KCR have been submitted to the North American Association of Central Cancer Registries (NAACCR) for an external evaluation of completeness, accuracy, and timeliness. For each year of data evaluated (1995 through 2006) KCR received the highest level of NAACCR certification. KCR is one of only 9 U.S. cancer registries to receive the gold certification in each year since the certification program was established. KCR has also submitted its data for inclusion in the Cancer in North America (CINA) publication. A registry must have complete data that meet the NAACCR certification standards for each of the most current five years before the data can be included in the CINA combined rates. KCR data have been included in the CINA combined rates each year since five years of KCR data have been available. The KCR data represent cancer cases occurring in a state with a large rural population characterized by high rates of cancer mortality, poverty, and low literacy. In addition, approximately 1.2 million Kentucky residents live in the geographic area defined as Appalachia. The 54 county region of the state classified as Appalachia has cancer mortality rates that are substantially higher than either the U.S. or other regions of Appalachia. This is an important sector of the U.S. population that is only represented in the SEER dataset through cases contributed by KCR. During the most current 5 year period (2007-2012), KCR has added approximately 119,922 new primary cases of cancer to the SEER dataset. All cases submitted to SEER from 2000 forward are complete in all reporting details required by the SEER Program. This proposal lays out a detailed plan for continuing to add these important cases to the SEER dataset.
Effective start/end date6/1/144/30/15


  • National Cancer Institute: $1,546,122.00


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