Documentation

Background
Data Sources
Mission and goals

Technical Notes
Annual Updates
Cancer Incidence Classification
Cancer Sites
Definitions
Grade/Cell Disorder
Rate Calculation
Stage

Background
The Missouri Cancer Registry (MCR) is mandated by the state of Missouri (192.650-192.657 RSMo http://www.mogo.state.mo.us/statutes/c192.htm). MCR is a collaborative partnership between the Missouri Department of Health and Senior Services (DHSS) and the University of Missouri. Since 1995, MCR has received financial support from the Centers for Disease Control and Prevention's National Program of Cancer Registries (CDC-NPCR). (For more information about the Missouri Cancer Registry and Research Center (MCR-ARC), go to their website: http://mcr.umh.edu).

With submission of 1998 data to the North American Association of Central Cancer Registries (NAACCR) in 2000, MCR became a NAACCR-certified registry. MCR data for diagnosis years 1999 through 2011 meet the Gold Certification standard. (See NAACCR Criteria and Standards for High Quality Data for Registry Certification, http://www.naaccr.org/index.asp?Col_SectionKey=12&Col_ContentID=54.)

Mission and Goals
MCR-ARC's mission is to maintain a statewide cancer surveillance system and participate in research in support of the prevention of cancer and the reduction of the cancer burden among Missouri residents.
The goals of MCR-ARC are to:

Data Sources
MCR is the only source of population-based cancer incidence data for the state. Hospitals and other entities where cancer is diagnosed and/or treated report newly diagnosed cancer cases occurring among Missouri residents or residents of other states/territories/countries to MCR monthly or quarterly, depending on their caseload.

For the years 1996-1999, mandatory reporting of cancer was limited to hospital inpatient cases. Some hospitals, generally those accredited by the American College of Surgeons (ACoS), voluntarily reported outpatient cases. With enactment of an expanded reporting requirement in 1999, all known in-state sources of cancer cases are now covered by Missouri statute (192.650 RSMo). Since 1999, reporting of cancer cases has been required from inpatient hospital settings, outpatient hospital settings, pathology laboratories, ambulatory surgical centers, freestanding cancer clinics and treatment centers, skilled nursing facilities, intermediate care facilities, residential care facilities, assisted living facilities and physician offices. The rule governing expanded reporting, 19 CSR 70-21.010 became effective 30 December 2000 and may be found at http://www.sos.mo.gov/adrules/csr/current/19csr/19csr.asp#19-30.

In common with other registries funded by CDC-NPCR or the National Cancer Institute’s (NCI’s) Surveillance, Epidemiology and End Results (SEER) program, MCR collects data using uniform data items and codes as documented by NAACCR.1 This uniformity ensures that data items collected by all central registries and federal programs are comparable. Information on primary site and histology is coded according to the International Classification of Diseases for Oncology, Third Edition (ICD-0-3)2. MCR and other NPCR and SEER cancer registries consider as reportable all incident cases with a behavior code of 2 (in situ, non-invasive) or 3 (invasive, primary site only) in the ICD-O with the exception of in situ cancer of the cervix. Non-genital basal and squamous cell carcinomas of the skin are also excluded.2 Intracranial and central nervous system tumors with a behavior code of 0 (benign) or 1 (borderline) diagnosed on or after 1 January 2004 are reportable. For further details, see the MCR-ARC Abstract Code Manual available at http://mcr.umh.edu/mcr-cancer-reporting-hospital.php.

MCR obtains additional cases or treatment information from other central cancer registries with which MCR has case-sharing agreements. Currently, through this mechanism 19 states report incidence data to MCR on Missouri residents diagnosed and/or treated for cancer in their states. Registries in Kansas, Texas, Illinois, Arkansas, Nebraska and Iowa provide the majority of these cases. MCR identifies additional cases through an annual review of death certificates. In a process called "death clearance and follow-back," MCR staff link an annual death file with the MCR database; they update the vital status of patients already in the database and identify potentially missed cases of cancer. They contact hospitals and other reporting facilities for information when the death certificate lists some type of cancer as a cause of death but the death cannot be matched with a case in the MCR database. MCR also sends records for which no information can be obtained to DHSS for linkage with their hospital discharge database. In 2014, MCR initiated linkage with the National Death Index (NDI), administered by the National Center for Health Statistics, in order to have complete death information, thus facilitating survival analysis.

Cancer Incidence Selection and Classification
In order to compare incidence across years and with other sources, only cases with "SEER Behavior Recode for Analysis" equal to either 2 (in situ) or 3 (malignant in both ICD-O-2 and ICD-O-3) are selected for inclusion in MICA. For the definition of "SEER Behavior Recode for Analysis," see http://seer.cancer.gov/behavrecode/ under the heading "SEER 1973-2004 SEER Research Data (November 2006 submission) and Later Releases." The International Classification of Diseases for Oncology (ICD-O-3)2 codes are categorized according to a SEER site recode, which defines a standard grouping of primary cancer sites and histologies (http://seer.cancer.gov/siterecode/icdo3_dwhoheme/index.html). This standardized classification scheme allows comparisons of Missouri data with many international, national and state publications.

Annual Updates
Cancer incidence data are updated annually. Following national guidelines, MCR submits an annual data set to CDC-NPCR and NAACCR by December of the second year following the close of the diagnosis year. This annual data submission is Missouri's official cancer incidence dataset and is used for MICA, which is updated within four months following the CDC-NPCR and NAACCR data submission. The dataset submitted to CDC-NPCR and NAACCR each year and used to update MICA contains not only incidence data for the report year but is also updated for all previous diagnosis years from 1996 onward.

Cancer Sites
There are three state and BRFSS regional MICAs from which to choose. Two contain seven major cancer sites: Breast; Cervix; Colon, Rectum and Rectosigmoid Junction; Lung and Bronchus; Prostate; Urinary Bladder; Corpus and Uterus, NOS; and all, which includes not only seven major sites but all other sites as well. One of the seven-site MICAs contains county-level data but restricts the years of interest to groups of three. The other seven-site MICA allows single year data, but does not display county-level data. The final MICA contains nineteen cancer sites; the seven major sites can be found within this list either directly or through drill-downs.

Grade/Cell Disorder
When selecting grade from the drop-down list, please note that levels of differentiation are applicable to ALL cancers; however, T-cell, B-cell and Null-cell choices are only applicable to leukemias and lymphomas. For more information on grade, please go to: http://www.cancer.gov/cancertopics/factsheet/Detection/tumor-grade.

Stage
When creating a rate to be compared with other national or state cancer incidence data, use "invasive" only. This is because "in situ" and "all stages" (which includes "in situ") are generally not included in data from the Surveillance, Epidemiology and End Results (SEER). SEER is a major source of cancer data provided by the National Cancer Institute, and is the standard for national and state cancer incidence data. Please note that, for bladder cancer, "in situ" is included in "invasive" in MICA and data released by SEER. As noted above, in the MICA containing county-level data, the cancer sites provided include both "in situ" and "invasive" cases. When selecting rates, "invasive" stage should be selected to make the rates compatible with national SEER data.

Rate Calculation
The cancer incidence rate is the number of new cancers of a specific site/type occurring among Missouri residents during a year, expressed as the number of cancers per 100,000 population. Unadjusted incidence rates are determined by dividing the number of newly identified cases in a given year by the mid-year Missouri population estimates. For comparability between subpopulations and with other sources, age-adjusted incidence rates are calculated by default and using the 2000 US Census standard. For more information about age-adjustment of rates, see http://health.mo.gov/data/mica/CDP_MICA/AARate.html. Rates based upon fewer than 16 cases are suppressed, as they are likely to be unreliable. They are shown as "@.@".

Population estimates used in calculating rates for the Cancer MICA are derived from files created by the US Census Bureau and the National Center for Health Statistics (NCHS). For more information about the Population data used, go to http://health.mo.gov/data/mica/PopulationMICA/Documentation.html.

Footnote
* This project is supported in part by a cooperative agreement between the Centers for Disease Control and Prevention (CDC) and the Missouri Department of Health and Senior Services (DHSS) (#U58/DP003924-03) and a Surveillance Contract between DHSS and the University of Missouri. For more information about the National Program of Cancer Registries, go to: http://www.cdc.gov/cancer/npcr/about.htm.

References
1Thornton, ML (ed). Standards for Cancer Registries, Volume II: Data Standards and Data Dictionary, eighteenth ed., Version 14. Springfield, IL: North American Association of Central Cancer Registries; September 2013.

2Fritz A, Percy C, Jack A, Shanmugaratnam K, Sobin L, Parkin DM, Whelan S. International Classification of Diseases for Oncology, Third Edition. Geneva, Switzerland: World Health Organization; 2000.