CRSM Chapter 1

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Cancer Registry
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The cancer registry is an information system designed for the collection, storage, management, and analysis of cancer patient data
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Cancer Registry Purpose
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The purpose of the cancer registry is: •To establish and maintain a cancer incidence reporting system •To be a data resource for physicians, researchers, and facility staff •To provide data to assist public health officials and agencies in the planning and evaluation of cancer prevention and cancer control programs
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ACoS/CoC
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American College of Surgeons Commission on Cancer * In 1996, the ACoS CoC required health care facilities to submit data to the National Cancer Data Base.
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SEER
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Surveillance, Epidemiology, and End Results Program at the National Cancer Institute * national population-based cancer registry that monitors a representative sampling of certain geographic areas *The data are used to determine representative national cancer incidence, mortality, and survival rates. The SEER Program is also a data standard setting organization for cancer registries. * In 1971 the National Cancer Act established the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program
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NPCR
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National Program of Cancer Registries at the Centers for Disease Control and Prevention
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State registry how it works
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Because state registries receive cases from all facilities in the state, a patient may be reported from more than one facility. For example, a patient may receivesurgery at one facility and radiation therapy at another. Both facilities would report their information to the central cancer registry. To be able to have an accurate count of new cancer patients and new cancers, this information needs to be linked. To have the most complete information on each patient, the state registry merges or combines information from all reports that are identified as being for the same patient and for the same cancer. If a new cancer is diagnosed for a previous patient, a new cancer record is linked to that person. If there is any conflicting information reported, such as a different race or sex, the central registry contacts to the reporting facilities to determine the correct information. In addition to the individual reports from the facilities, the central registry creates a consolidated record that containsthe most complete and accurate data for that patient from all reporting sources.
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NCDB
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Health care facilities that are accredited by the American College of Surgeons (ACoS) Commission on Cancer are required to submit their data to the ACoS’s National Cancer Data Base in addition to the central or regional population-based databases or registries. The NCDB is a multi-hospital database that monitors cancer care in ACoS Approved Cancer Programs. The information collected is available to the participating health care facilities for comparisons of care studies and other quality improvement initiatives. The NCDB is a nationwide oncology outcomes database and has provided the basis for many patterns of care studies.
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The National Cancer Act of 1971
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mandated collection, analysis & dissemination of data useful in the prevention, diagnosis & treatment of cancer and established the Surveillance Epidemiology and End Results Program (SEER). SEER began collecting data on cases diagnosed on January 1, 1973
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NVSS NCHS
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The National Vital Statistics System (NVSS) is part of the National Center for Health Statistics (NCHS). NVSS provides the nation’s official vital statistics data based on the collection and registration of birth and death events at the state and local level. These data are provided through contracts between NCHS and vital registration systems operated in the all 50 States which have the legal authority for the registration of these events. The states are responsible for maintaining registries of vital events and for issuing copies of birth, marriage, divorce, and death certificates.
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NPCR
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*The 1992 Cancer Registries Amendment Act created the National Program of Cancer Registries and authorized the CDC to enhance centralized cancer operations in all states and establish Cancer Registries in the 10 states where they did not previously exist. *The Centers for Disease Control’s National Program of Cancer Registries (NPCR) provides funds and technical assistance to improve cancer registration throughout the United States. NPCR is also a data standard setting organization for cancer registries. Example of a population-based national Cancer Registry. State central cancer registries funded by NPCR submit their data to the NPCR database. The database that is maintained by NPCR is used to monitor the burden of cancer for the nation.Data are provided for research, evaluation of cancer control activities and to plan for future healthcare needs. *The CDC has administered the NPCR since 1995 *NPCR is expanding efforts to improve and use cancer data by:Providing technical assistance to registries to help ensure datacompleteness, timeliness, and quality. Coordinating and convening meetings of registry personnel for information sharing, problem solving, and training *And collaborating with federal, state, and private organizationsto design and conduct research using data collected through state registries.
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CDC NAACCR
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* The North American Association of Central Cancer Registries (NAACCR) was established in 1990 to set standards for data collection and reporting. NAACCR today certifies central registries in the United States and Canada. NAACCR annually publishes data that is voluntarily submitted from member central cancer registries in Cancer in North America. *CDC has established national standards to ensure the completeness, timeliness, and quality of Cancer Registry data. CDC urges central Cancer Registries to incorporate standards for data quality and format as described by the North American Association of Central Cancer Registries (NAACCR). In 1997, NAACCR instituted a program that annually reviews member registries’ abilities to produce complete, accurate, and timely data. Registries that meet the highest standards receive NAACCR certification
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NPCR SEER collaborate joint report
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Today, NPCR and SEER registries work collaboratively to collect and report cancer statistics on the entire U.S. population. In 2002, SEER and NPCR published their first joint report on the state of cancer in the United States. The 2004 publication covered 92% of the U.S. population.
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IACR
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The International Association of Cancer Registries (IACR) was founded in 1966, as a professional society dedicated to fostering the aims and activities of cancer registries worldwide. It is primarily for population-based registries, which collect information on the occurrence and outcome of cancer in defined population groups (usually the inhabitants of a city, region, or country). The Association was created to foster the exchange of information between cancer registries internationally, so improving quality of data and comparability between registries. The Association is a non-governmental organization that has been in official relations with the World Health Organization since January 1979. IACR publishes Cancer in Five Continents.
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Codes standard setting SNOMED ACoS COC NPCR SEER NAACCR WHO
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The language of the Cancer Registrar is a series of codes that are uniform throughout the United States. The codes are developed by organizations known as standard setting organizations. These include NPCR, SEER, the North American Association of Central Cancer Registries (NAACCR), the World Health Organization (WHO), American Association of Cancer Research (AACR), the Systematized Nomenclature of Medicine (SNOMED) and the American College of Surgeons Commission on Cancer, (ACoS COC.)
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Edwin Smith and George Ebers papyri
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This is one of seven papyri relating the earliest known descriptions of cancer. The seven papyri, discovered and deciphered late in the nineteenth century, provided the first direct knowledge of Egyptian medical practice. Two of them, known as the Edwin Smith and George Ebers papyri, contain descriptions of cancer written about 1600 B.C., and are believed to date from sources as early as 2500 B.C. The Smith papyrus describes surgery, and Ebers’ outlines pharmacological, mechanical, and magical treatments.
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Bills of Mortality
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A more recent history of Cancer Registries dates back almost four centuries. Cancer was first recorded as a cause of death in 1629 in England in the Bills of Mortality in 1629. The first systemized collection of information on cancer was in 1728 in London. In 1839 the implementation of death registration in the United States began. In 1842, an Italian physician surveyed the entire population of his hometown, Verona, to determine the prevalence of certain diseases, including cancer. Based upon his surveys, he reported notable differences in the rates of certain types of cancer in nuns and married women.
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First cancer registry
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The Cancer Campaign Committee of the Congress of North American Surgeons in 1913 launched the first project in the United States, which successfully demonstrated the use of data collection methods to monitor and evaluate patterns of outcome of cervical cancer treatment. A decade later in 1923, the first Cancer Registry was launched in the United States-a bone sarcoma registry, followed in 1925 by registries for cancers of the breast, mouth, tongue, colon, and thyroid
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First central state registry CoC req all approved cancer programs to have registries 1956
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The American College of Surgeons Commission on Cancer initiated clinical surveys in 1930 and began approving cancer clinics. Though they were not required, most clinics initiated some form of cancer data collection. One of the first central state registries began in 1932 in Connecticut. In 1956, the Commission on Cancer required all approved cancer programs (located primarily in hospitals) to have registries.
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1974 first population-based cancer registration
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The first Population-based cancer registration officially began in 1974
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1974 NCRA chartered 1983 CTR exam
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National Cancer Registrars Association (NCRA) was chartered as the National Tumor Registrars Association. In 1983, NCRA began administering the certification examination of Cancer Registrars. In its first year, more than 350 professionals were awarded the CTR (Certified Tumor Registrar) credential. *The mission of NCRA is to promote education, credentialing, and advocacy for Cancer Registry professionals. *The vision statement is to serve professionals who provide data that makes a difference in the fight against cancer. * The core values that NCRA is built upon are networking, mentoring, and making a difference.
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Central registry work
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involves almost no abstracting but does require extensive data standard knowledge, knowledge of the disease process, standards of care, and new technologies-both database and medical. strong emphasis on monitoring the quality of the data received. important to assure that the data collected are complete and that all of the cancer cases diagnosed in the state within each year are identified. Once the data are complete, central registrars work with researchers and epidemiologists to report the findings and provide data to community leaders to assist in cancer program planning. This extensive knowledge allows the central cancer registrar to carry out the duties of the central cancer registry, resulting in complete and accurate information on the cancer burden of the state. Many central registrars play an active role in providing education and training to new registrars entering the profession.
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John Graunt Sir Edmund Haley Life Table
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A London businessman, named John Graunt, has been credited with inventing the science of medical epidemiology and statistics. He compiled decades of mortality data and published results of his findings. Graunt was the first person to use his data to project population survival. A few years later, Sir Edmund Haley based the first actuarial tables on Gaunt’s work. The “life table” concept is now the backbone of cancer outcomes analysis.
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Facility based registry
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include integrated networks, individual hospitals, freestanding cancer centers, and oncology components within a larger cancer program * focus of the hospital-based cancer registry is on clinical care and hospital administration. The data is used by administration in making decisions about service and money allocation, by physicians for education and studies, and much, much more. In hospitals with ACoS/CoC-accredited cancer programs, the cancer registry supports the activities of the cancer program and participates in ensuring that the cancer program meets the requirements for accreditation. *The goals of a facility-based registry include: •Quality patient care •Administrative information •Professional education •Clinical research
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central cancer registry CCR
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For consistency in this program, the use of the term central cancer registry refers only to population-based central registries (A “central registry” for a group of affiliated hospitals, for ie, is not population based) *The goals of a populations based registry are: •Cancer prevention •Early detection •Determination of cancer rates and trends •Patterns of care and outcomes •Research •Evaluation of control efforts *Most, if not all, CCRs actually receive the largest percent of cases from hospital registries, perhaps as high as 80%, because at some point a patient with cancer, or even a history of cancer, is likely to be seen at the hospital for some reason. *covers a defined population
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reporting sources
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sources of information for the central cancer registry CCR *centers, hospitals, and physician offices. These physician office practices would be specialists that manage cancer patients such as dermatology, urology, medical oncology, radiation oncology, and the like. It would not be time effective or cost effective to require a family physician to report because a patient with cancer would most likely be referred to a specialist.
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Case consolidation
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=record linkage. Performed by CCR. requires a manual review of the reports in the database and is the responsibility of highly trained cancer registrars. This ensures that each case of cancer is counted only once in state and national cancer data.
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data set
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a fundamental data set used by all registries that consists of five components: incidence, •cancer type(s), •extent of disease, •treatment, •and survival. The goal of cancer data analysis is to provide useful information to control cancer and improve patient care.
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reference date
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always January 1 of any given year. provides the start date of data collection
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reportable list
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specifies which neoplasms will be included in the registry database. must identify all types of cases to be included in the cancer registry database. Usually, this will consist of all malignancies diagnosed or treated at the facility.
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FORDS
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Facility Oncology Registry Data Standards

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