About the New York State Cancer Registry
What is the Cancer Registry?
Cancer is a reportable disease in every state in the United States. In New York State, Public Health Law Section 2401 requires that all physicians, dentists, laboratories, and other health care providers notify the Department of Health (the Department) of every case of cancer or other malignant disease. Through the New York State Cancer Registry, the Department collects, processes and reports information about New Yorkers diagnosed with cancer.
What is the Cancer Registry used for?
Cancer Registry data are routinely used by programs within the Department of Health, county and local health departments, patient advocacy groups, public interest groups, researchers and the public. The data are used for public health planning and evaluation as well as for research. Because the Registry has collected statewide data since 1976, it can be used to monitor cancer incidence patterns and trends for all areas of New York State.
The Cancer Registry plays an important role in research to identify the causes of cancer. Researchers often use the data collected by the Cancer Registry to identify cancer patients who could be interviewed about possible exposures they had before they were diagnosed with cancer. These can be compared to interviews among people without cancer to determine if cancer patients had different exposures. Researchers can also use Registry data to determine whether groups of people with specific exposures, such as those who work in a particular occupation or with a particular substance, are more likely to develop cancer than people who do not have these exposures. Registry data are also linked to other data sources such as hospital discharge files to evaluate health services.
What does the Cancer Registry do to protect privacy?
All information reported to the New York State Cancer Registry is confidential, and strict procedures are in place to protect patients' privacy. For example, access to the Registry offices is restricted. All employees are trained in handling confidential information. State law limits use of confidential cancer data to research. All research studies involving data with patient identifiers must be reviewed by the Health Department's Institutional Review Board, which protects rights of privacy and informed consent. Statistics for areas smaller than the county level are only released when there are enough cases in the area to guard against revealing confidential information about individuals.
How long has the Cancer Registry been collecting and reporting cancer data?
The New York State Cancer Registry is one of the oldest cancer registries in the country and has been collecting information on patients with cancer for more than 50 years. The first state regulation requiring reporting of cancer cases diagnosed in New York State, excluding New York City, was passed in 1939. In 1973, the law expanded the Registry to include reporting of information on cancer patients diagnosed in New York City. Evaluation of the reporting patterns shows that 1976 is the first year that is considered complete enough to use for analysis of statewide cancer trends.
In 1995, the Cancer Registry began receiving additional funding from the Centers for Disease Control and Prevention (CDC) under the federal Cancer Registries Amendment Act. These funds have allowed for many improvements in collecting and processing data and in expanding the number of data elements collected on each cancer patient, consistent with the standards of the National Program of Cancer Registries. All Cancer Registry data from 1976 to the present were converted into a new database for processing and storage. In September 1997, the Cancer Research Improvement Act of 1997 was signed into law in New York State. This law included new provisions requiring all reporting facilities with more than 100 diagnosed cases per year to have the abstracting and reporting functions performed by Certified Tumor Registrars starting in the year 2000. The law also specifies that reporting facilities must report within six months from the date the patients are diagnosed or examined.
What information is collected about patients with cancer?
When the Cancer Registry first started collecting data, only a minimal amount of information about patients and tumors were collected. Over the years, the volume of cancer cases has increased and the amount of data collected for each case has expanded. The Cancer Registry collects data on the anatomic sites of tumors, the stages at diagnosis, the cell types of the cancers and, more recently, some treatment information. When a person is diagnosed with more than one type of cancer, this information is collected for each separate tumor. The Cancer Registry also collects specific sociodemographic information (age, gender, ethnicity, race, residence, place of birth, etc.) on each individual diagnosed with cancer. Information about the date and cause of death of persons diagnosed with cancer is also stored on the database. In total, more than 100 different pieces of information on each person are contained in the Registry database.
The Cancer Registry includes reports of all malignant cancers, except selected skin cancers. Basal cell and squamous cell cancers of the skin are exempt from reporting. Malignant cancers include those with both in situ and invasive behavior. In situ cancers are very early cancers, while invasive cancers have more potential to spread. The Cancer Registry also collects data on brain and nervous system tumors classified as benign or which have an uncertain behavior. Benign tumors are growths that do not have the potential to metastasize beyond the tissue where they originated.
Where do reports of cancer cases come from?
Each time a person is diagnosed with a tumor, the hospital(s) where that person is diagnosed and/or treated reports information about the person and tumor to the Cancer Registry. Reporting is not voluntary; Public Health Law Section 2401 requires reporting. Civil penalties can be levied for noncompliance with the law. The law specifies that reports will be submitted within six months of patient diagnosis. Although the law requires that all cancer cases be reported to the Cancer Registry regardless of where they are diagnosed, in practice, cancer reports have been received mainly from hospitals throughout the state. Other types of reporting facilities, such as pathology laboratories, physicians and ambulatory care centers, also report cases. Although veterans' hospitals and military hospitals are exempt from the reporting requirements, many voluntarily report cancer cases to the Cancer Registry. In addition, interstate reporting agreements with 22 states, including all neighboring states as well as Florida, help ensure the completeness of reporting. Another source of information about cancer patients is death certificates.
How is the quality of the cancer registry data assured?
The New York State Cancer Registry participates in the North American Association of Central Cancer Registries (NAACCR) certification process. As part of this process, the Cancer Registry submits data annually to be evaluated for timelines, completeness and quality. The New York State Cancer Registry received Silver- level certification for 1997 data and Gold-level certification for 1998 through 2013 data. All data presented in this report, diagnosis years 2009 to 2013, meet the Gold standard for all NAACCR measures of data quality, including overall completeness, percent of cases with information on key data items (county of residence at diagnosis, race, gender and age), prevalence of unresolved duplicates, percent of cases reported from death certificates only and the percent of cases passing interfield data edits.
How long does it take to process the cancer data?
The Cancer Registry receives almost two hundred thousand reports of invasive cancers per year, representing over 100,000 new tumors. It currently takes about two years beyond the end of each year for Cancer Registry data to be available. This time frame is in line with national standards and consistent with the availability of cancer data from other state registries.
Are there national cancer data or data from other states available?
The U.S. Congress passed the Cancer Registries Amendment Act in 1992, which authorized the National Program of Cancer Registries (NPCR) of the Centers for Disease Control and Prevention. The NYSCR has received support from the NPCR since 1996, which has enabled the New York State Cancer Registry to achieve 'gold' status for the quality and completeness of its cancer data. Through ongoing collaboration with the SEER program, the NPCR provides nationwide, regional, and state-based cancer incidence and mortality data published in the United States Cancer Statistics (http://www.cdc.gov/Features/CancerStatistics/) and also available in the CDC WONDER web-based query system (http://wonder.cdc.gov/) . The United States Cancer Statistics currently covers 99% of the United States population.
The New York State Cancer Registry is a member of the North American Association of Central Cancer Registries (NAACCR), which sets data standards and best practices for population-based registries. Thanks to the advent of federal funding for cancer registries, the NAACCR membership now includes central registries in all fifty states and the District of Columbia, as well as in the Canadian provinces, and in Puerto Rico and Guam. NAACCR compiles and publishes Cancer in North America and associated data products, which are available at http://www.naaccr.org/Research/CINAProducts.aspx.
When the New York State Cancer Registry updated its database in 1996, it adopted the SEER and NAACCR standards for coding data. One major change in the collection and coding of multiple primary tumors was important for the interpretation of cancer incidence statistics. For cancer cases diagnosed prior to 1996, New York used the International Agency for Research on Cancer (IARC) rule for counting primary tumors, which allows only one primary per site per person per lifetime. Thus the Cancer Registry would count only one breast cancer or one lung cancer per person. The SEER coding rules allow for multiple primary cancers in an anatomic site, based on the histology, length of time between the two tumors and the oncologist's determination as to whether a second cancer represents a second primary or a recurrence. According to data from the SEER program, about five percent of breast cancers, for example, are second primary cancers among women previously diagnosed with breast cancer. Because all data for cancers diagnosed prior to 1996 were coded using the IARC rules, New York data for some sites of cancer are not directly comparable to the SEER or NAACCR data. The extent of the effect for each cancer site is dependent on the site-specific probability of multiple primaries. Beginning with cases diagnosed in 1996, New York State's data are comparable to both SEER and NAACCR data. SEER data, which currently represent 26% of the U.S. population, are available at http://seer.cancer.gov/.
What kinds of data does the Cancer Registry release?
This report, Cancer Incidence and Mortality in New York State, is the Cancer Registry's principal publication. The printed volume provides the number of cancer cases or deaths and the age-adjusted rates by county, site of cancer and gender for the most recent five-year period. Five years of data are combined because the number of cases and rates for single years can vary considerably, particularly for most of the counties outside metropolitan areas and cities. Additional data are also provided in electronic format on the New York State Department of Health Internet site (www.health.ny.gov) and in printed format upon request. This includes detailed data on the number of cancer cases or deaths and rates by age, race and year of diagnosis, as well as the proportion of cases diagnosed at early stages. These data are made available for New York State, New York City, New York State exclusive of New York City, and the New York City Boroughs. Additional statistics available on the Health Department Internet site include incidence data for selected New York cities, New York City Neighborhoods and selected areas of Nassau, Rockland, Suffolk and Westchester counties, incidence and mortality for childhood cancers, and estimated prevalence for selected regions and counties. Users are referred to the SEER program Web site for classification rules of incidence (ICD-O-3), mortality (ICD-9 and ICD-10) and International Classification of Childhood Cancers.
As part of the New York State Department of Health's Cancer Surveillance Improvement Initiative, the New York State Cancer Registry has released data for breast, lung and bronchus, colorectal and prostate cancers by ZIP Code. These data and more information about this initiative can be found on the Health Department's Internet site.
The New York State Cancer Registry also releases a public use file for use with the National Cancer Institute's SEER*Stat program. This file contains cancer data for 1995 on and can be found on the Registry's web page (http://www.health.ny.gov/statistics/cancer/registry/).
We acknowledge the Centers for Disease Control and Prevention's National Program of Cancer Registries for its support of staff. Production of this Annual Report was supported in part by cooperative agreement 5U58DP003879 awarded to the New York State Department of Health. Its contents are solely the responsibility of the New York State Department of Health and do not necessarily represent the official views of the Centers for Disease Control and Prevention.