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Central Cancer Registry

2017 NPCR Registry of Excellence logo 2015 NAACCR Gold Certification logo 2018 U.S. Cancer Statistics Registry for Surveillance logo

Cancer Registries: Measuring Progress. Targeting Action (YouTube Video from CDC)

Introduction to Cancer Registries (YouTube Video from NAACCR)

NC CCR Brochure (PDF, 735KB)

Overview

The North Carolina Central Cancer Registry (CCR) is a population-based reporting system that serves as the sole repository of complete cancer incidence data for the State of North Carolina.

Population-based cancer surveillance is critical for cancer control activities aimed at reducing the morbidity and mortality of cancer, the second leading cause of death in the United States. The CCR collects, processes and analyzes data on all cancer cases diagnosed among North Carolina residents. This information furthers our understanding of cancer and is used to develop strategies and policies for its prevention, treatment, and control. The availability of data on cancer in the state allows health researchers to analyze demographic and geographic factors that affect cancer risk, early detection, and effective treatment of cancer patients. The data also help determine where early detection, educational, and other cancer-related programs should be directed. The CCR is recognized as one of the leading cancer registries in the U.S. and has been the cornerstone of a substantial amount of research on cancer in the North Carolina population. To date the CCR has collected detailed information on over 1.5 million cases of cancer among North Carolinians diagnosed from 1990 forward, and more than 55,000 new cases are added annually.

Incidence data collected by the CCR include any tumor, condition or diagnosis described as cancer, malignant/malignancy, carcinoma, sarcoma, melanoma, lymphoma, leukemia or chronic myeloproliferative disorders/myelodysplastic syndromes regardless of method of diagnosis (histology, cytology, radiology, laboratory results or other clinical means). Malignant cancers include in situ and invasive tumors. In situ cancers are very early cancers, while invasive cancers have the potential to spread. In addition, the CCR collects benign and non-malignant tumors arising in the central nervous system and grade III intraepithelial neoplasia arising in the anus, vagina and vulva. The CCR does not collect cases of carcinoma in situ of the cervix and basal and squamous cell carcinomas of the skin. These inclusions and exclusions of cancer cases are consistent with the guidelines for cancer registration practice in the U.S.

For each diagnosis of cancer, the CCR collects detailed information on the diagnosis such as the anatomic site of the tumor, stage at diagnosis, cell type of the cancer, and first course of treatment following initial diagnosis. The CCR also collects demographic information on the patient such as age at diagnosis, gender, ethnicity, race, residence at the time of diagnosis, and place of birth. Information about the date and cause of death is also maintained.

All health care providers are required by law to report cases to the CCR (as in nearly all other states), but the primary data source is hospitals with accredited cancer programs. For cases that are not reported by the hospital cancer registry, the CCR supplements data with reports from physician offices, free-standing treatment centers and clinics, pathology laboratories and other sources.

Every person in North Carolina benefits from cancer research. The NC CCR has provided data for hundreds of research studies over the years that have helped provide more understanding of the causes of cancer and improve cancer treatment and outcomes.

Primary Objectives

The CCR plays an important role in developing data driven objectives for the North Carolina Cancer Plan (2014-2020) and continues to serve as the key source of population-based data to assess the outcome of cancer control efforts in North Carolina.

The primary objectives of the CCR are to:

  • Provide an overview of the incidence of all cancers diagnosed in NC.
  • Maintain data that is properly classified according to national standards to ensure the uniform description and reporting of neoplastic diseases occurring in residents of NC. These standards serve as the national standard for reporting on the incidence and outcome of cancer to the healthcare community and the public in the U.S.
  • Publish annual incidence and mortality rates, cancer projections and survival rates.
  • Help cancer prevention programs, clinicians, epidemiologists, policy makers and the public understand the impact of cancer among North Carolinians and guide decisions about targeting cancer control resources.
  • Support the North Carolina Comprehensive Cancer Branch and the Advisory Committee on Cancer Coordination and Control (ACCCC), public health partners and advocates in the following:
    • development of the North Carolina Cancer Plan and the Cancer Burden document (PDF),
    • outreach efforts and activities related to prevention, early detection, care & treatment, education, surveillance and research in the state
    • implementation of clinic-level screening, outreach, education and use of the nationally recommended colorectal and lung cancer screening guidelines.
  • Support efforts by public health advocates focusing on the risk and burden of cancer.
  • Provide surveillance data to cancer prevention and early detection programs for targeting and evaluating cancer screening and cancer control programs.
  • Support efforts by community hospitals, health systems, and community-based cancer prevention programs by providing statistics on the distribution of cancer cases.
  • Promote research and investigations into the causes and treatment of cancers and help researchers identify and invite people to join research studies.
  • Respond to requests for data from public health, policy-making, epidemiological research and investigation groups related to cancer control efforts.
  • Respond to requests from local and state public health officials to address public concerns about cancer incidence in NC.
  • Address citizens’ questions and concerns about the incidence of cancer in NC.

The data submitted by hospital and non-hospital reporters to the CCR describes the “who”, “what”, “when”, and “where” of the cancer case at the time of diagnosis. However, the CCR does not collect data as to “why” the cancer occurred (i.e., etiology) nor can analyses of NC CCR data alone determine why the occurrence of cancers in a specific area or population is happening.

Certification

The CCR is a participant in the National Program for Cancer Registries (NPCR) External link that was established by the Centers for Disease Control and Prevention (CDC) External link in 1992, through the Federal Cancer Registry Amendment Act (Public Law 102-515). Most state central registries, including the NC CCR, are at least partially funded through this program. Through its national programs, CDC’s Division of Cancer Prevention and Control (DCPC) works with state health agencies, territories, tribes and tribal organizations, and other key organizations to develop, implement, and promote effective cancer prevention and control practices. The DCPC educates Americans about the symptoms of cancer and how to reduce their risk. Through NPCR, CDC supports central cancer registries in 46 states, the District of Columbia, Puerto Rico, the U.S. Pacific Island Jurisdictions and the U.S. Virgin Islands to maintain and operate registries.

Every year, NPCR receives data from funded state registries to enable public health professionals to understand and address the cancer burden across the nation. These data represent 97 percent of the U.S. population. Together, the NPCR and the National Cancer Institute’s Surveillance, Epidemiology and End Results (NCI SEER) program collect 100 percent of cancers diagnosed in the country. These data are put together every year as the United States Cancer Statistics (USCS) External link, the official federal government cancer statistics, and provides cancer information on the entire U.S. population. Cancer registries must meet the USCS criteria of submitting timely, complete and high-quality incidence data to be included.

The NC CCR has received the HIGHEST recognition from the CDC National Program of Cancer Registries for meeting the standards for Data Completeness and Quality. The NC CCR is one of only 16 state cancer registries to achieve this recognition for the most recent data submission, indicating the high-quality data available for cancer prevention and control activities at the local, regional and national levels. For the most recent submission, the CCR met and exceeded NDQS criteria. Thus, the North Carolina Cancer Registry data was determined to be fit and will be included in the U.S. Cancer Statistics Registry for Surveillance.

United States Cancer Statistics Data Brief No. 3, June 2018 External link (PDF)

The CCR is also a member of the North American Association of Central Cancer Registries (NAACCR) External link. NAACCR is a professional organization that develops and promotes uniform data standards for cancer registration, certifies population- based registries; and promotes the use of cancer surveillance data and systems for cancer control and epidemiologic research; public health programs, and patient care to reduce the burden of cancer in North America. The CCR has a well-established system of reporting cancer diagnoses using the nationally required specifications. Each year, the CCR submits its data to NAACCR.

The NC CCR has achieved the highest NAACCR standard for complete, accurate and timely data. The registry certification metrics are pre-determined and established by NAACCR. The sole purpose of the review is to indicate that the data from the year are of sufficiently high quality to use in the calculation of standard incidence statistics (i.e., for specific cancer types and for sub-state/province area [county] by sex, race, and age within the registry jurisdiction). NAACCR began the certification program in 1999 and the NC CCR has been awarded gold or silver certification since 2000 and has received gold certification for the past nine years in a row.

Rapid Case Ascertainment

Rapid Case Ascertainment (RCA) is an acceleration of the CCR’s reporting process for quick identification of patients with certain types of cancers throughout the state. Pathology reports are sent from hospitals/facilities within 1 month of diagnosis. The RCA Core at UNC Lineberger Comprehensive Cancer Center provides support to the CCR and local hospitals for the rapid case ascertainment program and facilitates cancer prevention and control research that requires early contact with patients. The CCR and its ability to provide a RCA system has made North Carolina a national leader in population-based cancer research. Without RCA, research involving timely patient contact would not be possible and peer reviewers and agencies may not fund.

For more information on the RCA program: Rapid Case Ascertainment External link

Published Statistics and Data

The NC CCR publishes annual cancer incidence and mortality reports, cancer profiles for all 100 counties every other year, cancer fact sheets, mapping of cancer incidence and mortality and other collaborative publications. These statistical reports and publications can be accessed on the CCR website.

The NC CCR data is also used in national publications, statistics and data visualization tools including:

Procedures for Data Release, North Carolina Central Cancer Registry, Revised January 2017 (106 KB PDF)

Authority

Cancer is a reportable disease in every state in the United States. In North Carolina, since 1947, cancer has been a reportable disease. NC General Statue Chapter 130A Article 7 specifies that all health care facilities and health care providers that detect, diagnose, or treat cancer or benign brain or central nervous system tumors must report to the central cancer registry within six months of diagnosis.

The law further states that if a health care facility or provider has failed to report at least 90 percent of its cases within six months of diagnosis, the CCR will notify the facility in writing of that fact within 30 days and the facility will be given another 30 days to fulfill its reporting requirement. If a facility is out of compliance for two consecutive quarters and is not demonstrating progress toward becoming compliant, the State Health Director will direct the CCR to collect the data and direct the facility to reimburse the CCR for all actual costs expended to obtain the data (up to $100 per case abstracted).

The Central Cancer Registry is established by North Carolina General Statute Chapter 130A - Article 7. Effective October 1, 2014, legislation mandates electronic reporting to the Central Cancer Registry. Its administrative rules are codified as North Carolina Administrative Code Title 10A - Chapter 47 SubChapter B External link.