Cancer registry

Last updated

A cancer registry is a systematic collection of data about cancer and tumor 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. [1]

Contents

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 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). [2] 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. [3] 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. [3]

There exist population-based cancer registries, hospital 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 established the first national cancer registry program. In 1992, U.S. Public Law 102-515 established the National Program of Cancer Registries (NPCR); it is administered by the US Centers for Disease Control and Prevention (CDC). [4] 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 pathologists, 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. 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, 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:

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. [5]

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. [6]

Registries by country

United States

SEER Registries

The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute 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. [7]

National Program of Cancer Registries (NPCR)

The National Program of Cancer Registries 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. [8]

National Firefighter Registry

Due to the lack of central and comprehensive sources of data, research on cancer rates amongst firefighters has been challenging. [9] [10] [11] [12] On July 7, 2018, Congress passed the Firefighter Cancer Registry Act of 2018 requiring the Centers for Disease Control and Prevention to create the National Firefighter Registry for Cancer designed to collect data on cancer rates among U.S. firefighters. [13] [14] [15]

Swedish Cancer Registry

The Swedish Cancer Registry  [ sv ] was established in 1958. 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). [16]

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 University of Valle School of Medicine in Cali, Colombia. [17] Currently, Cali Cancer Registry is recognized by the International Agency for Research on Cancer (IARC), an entity of WHO. [18] Cali Cancer Registry uses quality assurance procedures based on IARC guidelines to validate the quality of cancer registration. [19] Due to advances in cancer control and the Cali Cancer Registry, Cali is the first city to implement the initiative C/Can 2025: Challenge of Cities Against Cancer, [20] a project of the Union for International Cancer Control (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. [21]

Related Research Articles

<span class="mw-page-title-main">Cancer</span> Group of diseases involving cell growth

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 bleeding, prolonged cough, unexplained weight loss, and a change in bowel movements. While these symptoms may indicate cancer, they can also have other causes. Over 100 types of cancers affect humans.

Methicillin-resistant <i>Staphylococcus aureus</i> Bacterium responsible for difficult-to-treat infections in humans

Methicillin-resistant Staphylococcus aureus (MRSA) is a group of gram-positive bacteria that are genetically distinct from other strains of Staphylococcus aureus. MRSA is responsible for several difficult-to-treat infections in humans. It caused more than 100,000 deaths worldwide attributable to antimicrobial resistance in 2019.

<span class="mw-page-title-main">Uterine cancer</span> Medical condition

Uterine cancer, also known as womb cancer, includes two types of cancer that develop from the tissues of the uterus. Endometrial cancer forms from the lining of the uterus, and uterine sarcoma forms from the muscles or support tissue of the uterus. Endometrial cancer accounts for approximately 90% of all uterine cancers in the United States. Symptoms of endometrial cancer include changes in vaginal bleeding or pain in the pelvis. Symptoms of uterine sarcoma include unusual vaginal bleeding or a mass in the vagina.

<span class="mw-page-title-main">Kidney cancer</span> Medical condition

Kidney cancer, also known as renal cancer, is a group of cancers that starts in the kidney. Symptoms may include blood in the urine, a lump in the abdomen, or back pain. Fever, weight loss, and tiredness may also occur. Complications can include spread to the lungs or brain.

<span class="mw-page-title-main">Head and neck cancer</span> Cancer arises in the head or neck region

Head and neck cancer develops from tissues in the lip and oral cavity (mouth), larynx (throat), salivary glands, nose, sinuses, or skin of the face. The most common types of head and neck cancer occur in the lips, mouth, and larynx. Symptoms predominantly include a sore that does not heal or a change in the voice. In those with advanced disease, there may be unusual bleeding, facial pain, numbness or swelling, and visible lumps on the outside of the neck or oral cavity. Given the location of these cancers, it is possible for an afflicted individual to experience difficulty breathing.

<span class="mw-page-title-main">Gallbladder cancer</span> Medical condition

Gallbladder cancer is a relatively uncommon cancer, with an incidence of fewer than 2 cases per 100,000 people per year in the United States. It is particularly common in central and South America, central and eastern Europe, Japan and northern India; it is also common in certain ethnic groups e.g. Native American Indians and Hispanics. If it is diagnosed early enough, it can be cured by removing the gallbladder, part of the liver and associated lymph nodes. Most often it is found after symptoms such as abdominal pain, jaundice and vomiting occur, and it has spread to other organs such as the liver.

Public health surveillance is, according to the World Health Organization (WHO), "the continuous, systematic collection, analysis and interpretation of health-related data needed for the planning, implementation, and evaluation of public health practice." Public health surveillance may be used to track emerging health-related issues at an early stage and find active solutions in a timely manner. Surveillance systems are generally called upon to provide information regarding when and where health problems are occurring and who is affected.

The five-year survival rate is a type of survival rate for estimating the prognosis of a particular disease, normally calculated from the point of diagnosis. Lead time bias from earlier diagnosis can affect interpretation of the five-year survival rate.

<span class="mw-page-title-main">Vulvar cancer</span> Cancer involving the vulva

Vulvar cancer is a cancer of the vulva, the outer portion of the female genitals. It most commonly affects the labia majora. Less often, the labia minora, clitoris, or Bartholin's glands are affected. Symptoms include a lump, itchiness, changes in the skin, or bleeding from the vulva.

Heart cancer is an extremely rare form of cancer that is divided into primary tumors of the heart and secondary tumors of the heart.

Disease or patient registries are collections of secondary data related to patients with a specific diagnosis, condition, or procedure, and they play an important role in post marketing surveillance of pharmaceuticals. Registries are different from indexes in that they contain more extensive data.

<span class="mw-page-title-main">Surveillance, Epidemiology, and End Results</span> Program of the National Cancer Institute, US

The Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute (NCI) is a source of epidemiologic information on the incidence and survival rates of cancer in the United States.

<span class="mw-page-title-main">Nodular lymphocyte predominant Hodgkin lymphoma</span> Medical condition

Nodular lymphocyte predominant Hodgkin lymphoma (NLPHL) is a slow-growing CD20 positive form of Hodgkin lymphoma, a cancer of the immune system's B cells.

<span class="mw-page-title-main">Oncology</span> Branch of medicine dealing with, or specializing in, cancer

Oncology is a branch of medicine that deals with the study, treatment, diagnosis, and prevention of cancer. A medical professional who practices oncology is an oncologist. The name's etymological origin is the Greek word ὄγκος (ónkos), meaning "tumor", "volume" or "mass". Oncology is concerned with:

<span class="mw-page-title-main">Epidemiology of cancer</span> The study of factors in cancer causes and treatments

The epidemiology of cancer is the study of the factors affecting cancer, as a way to infer possible trends and causes. The study of cancer epidemiology uses epidemiological methods to find the cause of cancer and to identify and develop improved treatments.

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 America interested in enhancing the quality and use of cancer registry data. All central cancer registries in the United States and Canada are members.

<span class="mw-page-title-main">Active surveillance of prostate cancer</span>

Active surveillance is a management option for localized prostate cancer that can be offered to appropriate patients who would also be candidates for aggressive local therapies, with the intent to intervene if the disease progresses. Active surveillance should not be confused with watchful waiting, another observational strategy for men that would not be candidates for curative therapy because of a limited life expectancy. Active surveillance offers men with a prostate cancer that is thought to have a low risk of causing harm in the absence of treatment, a chance to delay or avoid aggressive treatment and its associated side effects. While prostate cancer is the most common non-cutaneous cancer and second leading cause of cancer-related death in American men, it is conservatively estimated that approximately 100,000 men per year in the United States who would be eligible for conservative treatment through active surveillance, undergo unnecessary treatments. The management of localized prostate cancer is controversial and men with localized disease diagnosed today often undergo treatments with significant side effects that will not improve overall health outcomes. The 2011 NIH State-of-the-Science Conference Statement on the "Role of active surveillance in the management of men with localized prostate cancer" pointed out the many unanswered questions about observational strategies for prostate cancer that require further research and clarification. These included:

<span class="mw-page-title-main">Childhood cancer</span> Medical condition

Childhood cancer is cancer in a child. About 80% of childhood cancer cases in high-income countries can be successfully treated thanks to modern medical treatments and optimal patient care. However, only about 10% of children diagnosed with cancer reside in high-income countries where the necessary treatments and care is available. Childhood cancer represents only about 1% of all types of cancers diagnosed in children and adults. For this reason, childhood cancer is often ignored in control planning, contributing to the burden of missed opportunities for its diagnoses and management in countries that are low- and mid-income.

<span class="mw-page-title-main">Calvin Zippin</span> Cancer epidemiologist and biostatistician

Calvin Zippin is a cancer epidemiologist and biostatistician, and Professor Emeritus in the Department of Epidemiology and Biostatistics at the University of California School of Medicine in San Francisco (UCSF). He is a Fellow of the American Statistical Association, the American College of Epidemiology and the Royal Statistical Society of Great Britain. His doctoral thesis was the basis for the Zippin Estimator, a procedure for estimating wildlife populations using data from trapping experiments. He was a principal investigator in the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute (NCI) which assesses the magnitude and nature of the cancer problem in the United States. In 1961, he created training programs for cancer registry personnel, which he conducted nationally and internationally. He carried out research on the epidemiology and rules for staging of various cancers. He received a Lifetime Achievement and Leadership Award from the NCI in 2003.

<span class="mw-page-title-main">National Firefighter Registry for Cancer</span> Registry of firefighters used to evaluate cancer risk

The National Firefighter Registry for Cancer (NFR) is a voluntary registry of firefighters in the United States used to evaluate cancer rates and risk factors in the U.S. fire service through collecting relevant occupational, lifestyle, and health information on firefighters. It aims to use these data to reduce cancer in firefighters.

References

  1. ↑ Khatib, O; Aljurf, M (Jan–Mar 2008). "Cancer Prevention and Control in the Eastern Mediterranean Region: The Need for a Public Health Approach". Hematol Oncol Stem Cell Ther. 1 (1): 44–52. doi: 10.1016/s1658-3876(08)50060-4 . PMID   20063528.
  2. ↑ "About the Program". Centers for Disease Control and Prevention. 2016-04-20. Retrieved 2016-05-15.
  3. 1 2 "Cancer Registrar FAQ". National Cancer Registrars Association. Archived from the original on 2011-11-07. Retrieved 2012-04-16.
  4. ↑ "Historical Events | SEER Training". SEER. Retrieved 2023-10-01.
  5. ↑ Gil, Fabián; De Vries, Esther; Wiesner, Carolina (2019). "Importancia del acceso de los registros de cáncer de base poblacional a las estadísticas vitales: Barreras identificadas en Colombia". Revista Colombiana de Cancerología. 23 (2): 56–61. doi: 10.35509/01239015.60 .
  6. ↑ "Who is certified". North American Association of Central Cancer Registries. Archived from the original on 2016-05-08. Retrieved 2016-05-15.
  7. ↑ "Overview of the SEER Program". National Cancer Institute. Retrieved 2012-05-03.
  8. ↑ "National Program of Cancer Registries". 2016-04-20. Retrieved 2012-05-03.
  9. ↑ Daniels, Robert D; Kubale, Travis L; Yiin, James H; Dahm, Matthew M; Hales, Thomas R; Baris, Dalsu; Zahm, Shelia H; Beaumont, James J; Waters, Kathleen M; Pinkerton, Lynne E (June 2014). "Mortality and cancer incidence in a pooled cohort of US firefighters from San Francisco, Chicago and Philadelphia (1950–2009)". Occupational and Environmental Medicine. 71 (6): 388–397. doi:10.1136/oemed-2013-101662. ISSN   1351-0711. PMC   4499779 . PMID   24142974.
  10. ↑ Tsai, Rebecca J.; Luckhaupt, Sara E.; Schumacher, Pam; Cress, Rosemary D.; Deapen, Dennis M.; Calvert, Geoffrey M. (May 6, 2015). "Risk of cancer among firefighters in California, 1988-2007". American Journal of Industrial Medicine. 58 (7): 715–729. doi:10.1002/ajim.22466. ISSN   0271-3586. PMC   4527530 . PMID   25943908.
  11. ↑ Lee, David J.; Koru-Sengul, Tulay; Hernandez, Monique N.; Caban-Martinez, Alberto J.; McClure, Laura A.; Mackinnon, Jill A.; Kobetz, Erin N. (April 2020). "Cancer risk among career male and female Florida firefighters: Evidence from the Florida Firefighter Cancer Registry (1981-2014)". American Journal of Industrial Medicine. 63 (4): 285–299. doi:10.1002/ajim.23086. ISSN   1097-0274. PMID   31930542. S2CID   210191181.
  12. ↑ Ma, Fangchao; Fleming, Lora E.; Lee, David J.; Trapido, Edward; Gerace, Terence A. (September 2006). "Cancer incidence in Florida professional firefighters, 1981 to 1999". Journal of Occupational and Environmental Medicine. 48 (9): 883–888. doi:10.1097/01.jom.0000235862.12518.04. ISSN   1076-2752. PMID   16966954. S2CID   45179842.
  13. ↑ "Firefighter Cancer Registry Act of 2018 (2018 - H.R. 931)". GovTrack.us. Retrieved May 9, 2022.
  14. ↑ "National Firefighter Registry". U.S. National Institute for Occupational Safety and Health. 2022-09-19. Retrieved 2022-11-08.
  15. ↑ "The National Firefighter Registry: An update on the plan to track firefighter cancer". FireRescue1. Archived from the original on April 7, 2022. Retrieved September 30, 2022.
  16. ↑ "Swedish Cancer Registry". National Board of Health and Welfare. Archived from the original on 2013-06-08. Retrieved 2012-05-03.
  17. ↑ Correa, Pelayo (October 2012). "The Cali Cancer Registry an example for Latin America". Colombia Medica. 43 (4): 244–245. doi:10.25100/cm.v43i4.1264. ISSN   1657-9534. PMC   4001967 . PMID   24893296.
  18. ↑ Piñeros, Marion; Abriata, María Graciela; Vries, Esther; Barrios, Enrique; Bravo, Luis Eduardo; Cueva, Patricia; Camargo Cancela, Marianna; Fernández, Leticia; Gil, Enrique; Luciani, Silvana; Pardo, Constanza (2020-12-14). "Progress, challenges and ways forward supporting cancer surveillance in Latin America". International Journal of Cancer. 149 (1): 12–20. doi: 10.1002/ijc.33407 . ISSN   0020-7136. PMID   33231289. S2CID   227159924.
  19. ↑ García, Luz Stella; Bravo, Luis Eduardo; Collazos, Paola; Ramírez, Oscar; Carrascal, Edwin; Nuñez, Marcela; Portilla, Nelson; Millan, Erquinovaldo (2018-03-30). "Cali cancer registry methods". Colombia Medica. 49 (1): 109–120. doi:10.25100/cm.v49i1.3853. ISSN   1657-9534. PMC   6018820 . PMID   29983471.
  20. ↑ "Cali | Colombia – C/Can – City Cancer Challenge". City Cancer Challenge. 2023-01-31. Retrieved 2023-10-01.
  21. ↑ Bravo, Luis Eduardo; Arboleda, Olga Isabel; Ramirez, Oscar; Durán, Alexander; Lesmes, Maria Cristina; Rendler-García, Melissa; Frech, Silvina; Camacho, Rolando; Henshall, Susan (2017-06-30). "Cali, Colombia, Key learning City C/Can 2025: City Cancer Challenge". Colombia Medica. 48 (2): 39–40. doi:10.25100/cm.v48i2.3203. ISSN   1657-9534. PMC   5625564 . PMID   29038608.
This page is based on this Wikipedia article
Text is available under the CC BY-SA 4.0 license; additional terms may apply.
Images, videos and audio are available under their respective licenses.