In this August edition, instead of focusing on a specific cancer, we take a broader look at how we learn about cancer trends. How do we know if different types of cancer are on the rise or if they are declining? Who is most affected? Are some parts of our country more prone to specific cancers? By highlighting Cancer Registrars and Cancer Registries, you will get a “behind the scenes” view of how parts of the cancer puzzle are pieced together. The 24th annual National Cancer Registrar’s Week, April 6-10, 2020, emphasized the important role of cancer registrars in capturing data that “informs cancer research, prevention, and treatment programs.”
What Are Cancer Registries and Why Are They Important?
Cancer registries are information systems designed to collect, manage and analyze cancer patient and survivor data. Four main types of cancer registries are hospital registries, central registries, a federal registry, and special purpose registries that maintain data on a particular type of cancer.2 Cancer registrars are specially trained staff that report cancer cases at the local hospitals or cancer centers to the state’s central cancer registry. These state registries send abstracted information on cancers diagnosed within the state to the Centers for Disease Control and Prevention (CDC).
Putting Cancer Registry Information To Work
The CDC oversees the National Program of Cancer Registries, which collects cancer data nationwide. This enables us to understand the population-based picture of cancer for the country as a whole, as well as at the regional, state, and county levels. Individual cancer patient data is de-identified, meaning that no one’s name, medical record number, or other identifying information is included. Cancer patient information and their treatment is synthesized by demographics (age, gender, race) and by tumor characteristics (year of diagnosis, site, stage, treatments) to help answer vital questions such as who is getting cancer, who is at the highest risk, where should we focus our prevention efforts, and how effective and useful are our prevention and screening programs.
What Does A Cancer Registrar Do?
Cancer registrars are trained data information specialists that capture a complete history, diagnosis, treatment and health status for every cancer patient in the U.S. They bridge the information gap between the individual cancer cases at the hospital or cancer center with statewide and national patterns. Their review of cancer patients’ medical records, such as the location of the cancer, how widely it has spread (stage), and treatment regimen, conveys a vital picture of new cases of cancer and cancer-care trends. Cancer registry data enables healthcare providers, public health officials, and researchers to monitor cancer incidence, investigate treatment patterns, evaluate the effectiveness of public health prevention and screening efforts, and develop methods to reduce cancer disparities.3
AU Medical Center Cancer Registry Staffing The Georgia Cancer Center has a six-person Cancer Registry team that includes a manager, four remote cancer registry abstractors, and one administrative assistant. For the past 12 years, Lonnetta Colton, RHIA, CTR has managed the Cancer Registry staff. In 2018, their team completed 2,627 abstracts of cancer cases, thus, playing a vital role helping assemble pieces of the cancer puzzle.
Sources
National Cancer Registrars Association. ncra-usa.org/About/National-Cancer-Registrars-Week
National Program of Cancer Registries (NPCR). Centers for Disease Control and Prevention (CDC) cdc.gov/cancer/npcr/index.htm
White MC, Babcock F, Weir HK. The history and use of cancer registry data by public health cancer control programs in the United States. Cancer. 2017 Dec 15; 123(Suppl 24):4969-4976.doi:10.1002/cncr.30905. ncbi.nlm.nih.gov/pmc/articles/PMC5846186
“The C Word” is a news brief of the Georgia Cancer Center at Augusta University. For cancer info visit: augusta.edu/cancer/community.To request exhibits or speaking engagements, contact Christine O’Meara at comeara@augusta.edu or 706-721-8353.
