Data Management and Oncology

Cancer registrars systematically capture all types of data about cancer and tumor diseases. They then place this information into a cancer registry. These data include patient demographics and medical history, diagnosis, treatment, and outcome for every cancer patient in the United States and other countries. The information is used to evaluate patient outcome, quality of life, provide follow-up information, calculate survival rates, allocate resources, analyze referral patterns, report cancer incidence, and evaluate treatment efficacy.

History

Yale-New Haven Hospital was the first to set up a cancer registry, in 1926.¹ In 1956, the American College of Surgeons developed a hospital-based cancer registry.¹ The National Cancer Act of 1971, an amendment to the Public Health Service Act of 1944, resulted in the establishment of the National Cancer Institute (NCI) in 1973.² The National Cancer Act of 1971, in addition to a variety of other improvements, provided additional funding for the NCI to establish an international cancer research database.² In 1973, the NCI established the first national cancer registry through its Surveillance, Epidemiology, and End Results (SEER) program.¹ United States Public Law 102-515 launched the National Program of Cancer Registries (NPCR) in 1992, which is administered by the CDC.¹

Registries

The 3 types of cancer registries are hospital based, population based, and special cancer. Hospital-based registries can be broken down into 2 subgroups: collective and single-hospital registries.^3,4

Hospital-based registries maintain data on all patients who receive a diagnosis of and/or are treated for cancer at an individual facility or a group of facilities. By law, these facilities must report this information to the proper state registry. All states have a central registry. The focus of the hospital-based registry is on clinical care and hospital administration.⁴

The National Cancer Data Base (NCDB) is a cooperative program of hospital-based registries of both the American Cancer Society and the Commission on Cancer.⁵ The primary goal of the NCDB is to ensure quality care to cancer patients.⁵ These data are used to assess patient management in hospitals or other facilities, compare cancer care and outcomes between facilities, and evaluate and set standards for improvement of cancer care.⁵

Population-based registries collect data on all cancer cases in a defined population. This could be a particular age group, a certain ethnic group, a geographical area, etc, highlighting epidemiology and public health.⁶ Population-based registries are intended to determine cancer patterns, monitor cancer trends, monitor planning and evaluate efforts to control cancer, prioritize health resource provisions, and advance cancer research.⁶

NCIs SEER program is an example of a population-based registry that collects data from certain geographic locations, representing about 28% of the US population. These data include the number of new cancer cases, survival status, and prevalence.⁵ The NPCR of the CDC also supports population-based registries for each of the state health departments.⁵

One example of a special cancer registry is the Familial Ovarian Cancer Registry, which is dedicated to providing data on familial ovarian cancer.

Cooperation of Registries

Cancer registries all use similar classification systems; thus hospital-based registries can share or obtain information from population-based registries or special registries and vice versa.

Cancer Reporting Standards

Although standards for data management procedures have been defined by various standard setters, the scope of operations is similar. These include case ascertainment, case inclusion, data analysis and exchange, parameters for updating data on file, follow-up, policies and procedures for adding new cases to the data set, publication, and staff qualifications and training. These differences in data management standards reflect differences in registry operations and are not contradictory.

The Future for Registries

The future looks bright for cancer registries. The CDC is planning pathways to allow research to be done on de-identified information. This should result in doctors’ getting more complete data on cancer and cancer care.

Kathleen Kenny, PharmD, RPh, earned her PharmD from the University of Colorado Health Sciences Center in Aurora. She has more than 25 years of experience as a community pharmacist and is a freelance clinical medical writer based in Colorado Springs, Colorado.

References

• National Cancer Institute. Historic events. training.seer.cancer.gov/registration/registry/history/dates.html. Accessed November 23, 2017.
• National Cancer Institute. National Cancer Act of 1971. cancer.gov/about-nci/legislative/history/national-cancer-act-1971. Published February 16, 2016. Accessed November 24, 2017.
• National Cancer Institute. Types of registries. training.seer.cancer.gov/registration/types/. Accessed November 24, 2017.
• National Cancer Institute. Hospital-based registries. training.seer.cancer.gov/registration/types/hospital.html. Accessed November 24, 2017.
• Cancer surveillance programs in the United States. American Cancer Society website. https://www.cancer.org/cancer/cancer-basics/cancer-surveillance-programs-and-registries-in-the-united-states.html. Updated March 20, 2014. Accessed November 24, 2017.
• National Cancer Institute. Population-based registries. training.seer.cancer.gov/registration/types/population.html. Published March 20, 2014. Accessed November 24, 2017.