A cancer registry is a systematic collection of data about
cancer
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal b ...
and
tumor
A neoplasm () is a type of abnormal and excessive growth of tissue. The process that occurs to form or produce a neoplasm is called neoplasia. The growth of a neoplasm is uncoordinated with that of the normal surrounding tissue, and persists ...
diseases. The data are collected by
Cancer Registrars. Cancer Registrars capture a complete summary of patient history, diagnosis, treatment, and status for every cancer patient in the United States, and other countries.
The Surveillance, Epidemiology and End Results (SEER) program of the National Cancer Institute (NCI) was established in 1973 as a result of the
National Cancer Act of 1971
The "war on cancer" is the effort to find a cure for cancer by increased research to improve the understanding of cancer biology and the development of more effective cancer treatments, such as targeted drug therapies. The aim of such efforts is t ...
. The National Program of Cancer Registries (NPCR) was established by Congress through the Cancer Registries Amendment Act in 1992, and administered by the Centers for Disease Control and Prevention (CDC). NPCR and SEER together collect cancer data for the entire U.S. population. CDC and NCI, in collaboration with the North American Association of Central Cancer Registries, have been publishing annual federal cancer statistics in the United States Cancer Statistics: Incidence and Mortality report. Information maintained in the cancer registry includes: demographic information, medical history, diagnostic findings, cancer therapy and follow up details.
The data is used to evaluate patient outcome, quality of life, provide follow-up information, calculate survival rates, analyze referral pattern, allocate resources at regional or state level, report cancer incidence as required under state law, and evaluate efficacy of treatment modalities.
There exist population-based cancer registries,
hospital
A hospital is a health care institution providing patient treatment with specialized health science and auxiliary healthcare staff and medical equipment. The best-known type of hospital is the general hospital, which typically has an emerge ...
cancer registries (also called hospital-based cancer registries), and special purpose registries.
History
In 1926, Yale-New Haven Hospital became the first to set up a cancer registry. In 1956, the American College of Surgeons (ACoS) formally adopted a policy to encourage, through their Approvals Program, the development of hospital-based cancer registries. In 1973, The Surveillance, Epidemiology and End Results (SEER) Program of NCI establishes the first national cancer registry program. In 1992, U.S. Public Law 102-515 establishes the National Program of Cancer Registries (NPCR) and is administered by the US Centers for Disease Control and Prevention (CDC
By 1993, most states considered cancer a reportable disease.
Types
Population-based cancer registry
Population-based cancer registries monitor the frequency of new cancer cases (so-called
incident cases) every year in well defined populations and over time by collecting case reports from different sources (treatment facilities, clinicians and
pathologist
Pathology is the study of the causal, causes and effects of disease or injury. The word ''pathology'' also refers to the study of disease in general, incorporating a wide range of biology research fields and medical practices. However, when us ...
s, and death certificates). The frequency of these incident cases are expected per 100,000 of the mother population. If an unexpected accumulation can be observed, a hypothesis about possible causes is generated. This hypothesis is investigated in a second step by collecting more detailed data. The aim is to recognize and to reduce risks. Population-based registries can also monitor the effects of preventive measures. All population-based central registries in the United States and Canada are members of the
North American Association of Central Cancer Registries
The North American Association of Central Cancer Registries, Inc. (NAACCR), established in 1987, is a collaborative umbrella organization for cancer registries, governmental agencies, professional associations, and private groups in North Amer ...
. This organization acts as a voice for the registries when dealing with national standard-setting organizations, sets standards for digital cancer record transmission, and certifies the registries for the quality of their data, among other functions.
Hospital cancer registry
Hospital cancer registries aim at the improvement of
cancer therapy
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal ble ...
, improve quality of care, evaluate adherence to guidelines, etc. They also serve as a source for epidemiological studies. Therefore, they have to collect detailed data about diagnosis, therapy, dates of important milestones in treatment, etc. Improvements can be achieved by:
* comparison of therapy - which therapy is the best for patients with similar characteristics
* comparison of therapists - which hospital, which physician has the best results under the same conditions (
quality management
Quality management ensures that an organization, product or service consistently functions well. It has four main components: quality planning, quality assurance, quality control and quality improvement. Quality management is focused not only ...
)
* evaluation of adherence to guidelines
* evaluation of timeliness of interventions (time to diagnosis, time to iniation of treatment, etc.) and their effect on prognosis
* support of treatment - registries can improve information about a patient and help to provide an optimal treatment by planning therapies and generating reminders
Cooperation
Since the data needed by hospital cancer registries usually include those of population-based cancer registries and both use the same
classifications, data can be sent from a hospital cancer registry to a population-based registry thus reducing documentation efforts. Important barriers and facilitators in this process include clear rules on data sharing, which in many countries may be problematic.
Some hospital and population-based cancer registries report their incidence data to national organizations that aggregate and publish the data, but in many countries the data are not centrally managed. The way in which these data are formatted to be submitted to these organizations are determined by standards released by standard-setting organizations. Edits are run on the data to check for inaccuracies and duplicate cases before being submitted electronically. Different organizations have different standards for data reliability and completeness, and some award certifications based on the adherence to these standards.
Registries by country
United States
SEER Registries
The Surveillance, Epidemiology, and End Results (SEER) Program of the
National Cancer Institute
The National Cancer Institute (NCI) coordinates the United States National Cancer Program and is part of the National Institutes of Health (NIH), which is one of eleven agencies that are part of the U.S. Department of Health and Human Services. ...
collects and publish data on cancer incidence and survival throughout the United States. The information from population-based cancer registries covers approximately 28 percent of the US population. This coverage includes 26 percent of African Americans, 41 percent of Hispanics, 43 percent of American Indians and Alaska Natives, 54 percent of Asians, and 71 percent of Hawaiian/Pacific Islanders. The SEER program population-based cancer registries include Arizona Indians, Cherokee Nation, Connecticut, Detroit, Georgia Center for Cancer Statistics (Atlanta, Great Georgia, and Rural Georgia), Greater Bay Area Cancer Registry (San Francisco-Oakland and San Jose-Monterey), Greater California, Hawaii, Iowa, Kentucky, Los Angeles, Louisiana, New Jersey, New Mexico, Seattle-Puget Sound, and Utah. Selection of the geographic areas is based on the ability to operate and maintain a high quality population-based cancer reporting system.
National Program of Cancer Registries (NPCR)
This is a USA-based program with state-based cancer registries that collect, analyze and report cancer cases and deaths to a central cancer registry. NPCR was established in 1992 and administered by the CDC. NPCR supports central cancer registries in 45 states, District of Columbia, Puerto Rico, and the U.S. Pacific Island Jurisdictions (covers approximately 96% of the U.S. population). State Cancer Registries monitor cancer trends, determine cancer patterns, direct planning and evaluation of cancer control programs, help set priorities for allocating health resources, promote research, and provide information on cancer incidence.
The data collected helps public health professionals understand and address the cancer burden. The ninth volume of Cancer Incidence in Five Continents, published by International Agency for Research on Cancer, includes cancer incidence data from 32 NPCR-funded registries. NPCR's future direction is to expand the use of information technology designed to support, improve, and enhance the management and exchange of electronic data in cancer surveillance.
National Firefighter Registry
Due to the lack of central and comprehensive sources of data, research on cancer rates amongst
firefighters
A firefighter is a first responder and rescuer extensively trained in firefighting, primarily to extinguish hazardous fires that threaten life, property, and the environment as well as to rescue people and in some cases or jurisdictions also ...
has been challenging. On July 7, 2018, Congress passed the Firefighter Cancer Registry Act of 2018 requiring the
Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention (CDC) is the national public health agency of the United States. It is a United States federal agency, under the Department of Health and Human Services, and is headquartered in Atlanta, Georgi ...
to create the National Firefighter Registry designed to collect data on cancer rates among U.S. firefighters.
Swedish Cancer Registry
The Swedish Cancer Registry was established in 1958. The health care providers in Sweden are required to report newly detected cancer cases diagnosed at clinical, morphological, and laboratory examination (as well as those discovered during autopsy) to the registry. Every year, the regional registries send cancer data to the National Cancer Register. The information available in the registry include patient's personal information (PIN, sex, age and place of residence), medical records (date of diagnosis, site of the tumor, method used for diagnosis, and hospital where the patient is being treated), and follow-up data (date and cause of death or date of migration).
Cali Cancer Registry
The
Cali Cancer Registry(Registro Poblacional de Cancer de Cali, in Spanish) started in 1962 as a research program of the Department of Pathology of the
Universidad del Valle School of Medicine in
Cali, Colombia
Santiago de Cali (), or Cali, is the capital of the Valle del Cauca department, and the most populous city in southwest Colombia, with 2,227,642 residents according to the 2018 census. The city spans with of urban area, making Cali the secon ...
. Currently,
Cali Cancer Registryis recognized by the International Agency for Research on Cancer (IARC), an entity of WHO
Cali Cancer Registryuses quality assurance procedures based on IARC guidelines to validate the quality of cancer registration. Due to advances in cancer control and the great strength o
Cali Cancer Registry Cali
Santiago de Cali (), or Cali, is the capital of the Valle del Cauca department, and the most populous city in southwest Colombia, with 2,227,642 residents according to the 2018 census. The city spans with of urban area, making Cali the second ...
is the first city in the world to implement the initiative
C/Can 2025: Challenge of Cities Against Cancer" a project of the
Union for International Cancer Control
The Union for International Cancer Control (previously named International Union Against Cancer) or UICC is a non-governmental organisation with some 1,180 member organisations in more than 170 countries.
UICC was founded in 1933 and is based i ...
(UICC) that seeks to increase the coverage and quality of oncological care in cities with more than one million inhabitants in low and middle income countries
References
External links
Cancer incidence and mortality patterns in Europe: estimates for 40 countries in 2012National Cancer Registrars AssociationU.S. National Cancer Institute SEER programCalifornia Cancer Registrars Association (CCRA)Surveillance Epidemiology and End Results (SEER)North American Association of Central Cancer Registries (NAACCR)Cancer Data Mapping and ReportingNational Cancer Registry Program of EgyptAustralasian Association of Cancer RegistriesSwedish Cancer Registry
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