Doctors rely on data and research to make the best recommendations for cancer care, from early detection to treatment. But physicians don’t gather data on their own; they rely on the information collected by a cancer registrar in a cancer registry.
If you haven’t heard of a cancer registry before, you’re not alone. Here’s what you need to know about this important resource for cancer care centers, medical staff and researchers.
What Is a Cancer Registry?
Each patient’s healthcare journey provides insight that can help doctors and researchers improve cancer treatment and prevention. A cancer registry is a comprehensive database of information about cancer patients from diagnosis through survivorship.
“It helps us know how cancer is affecting our communities, why it’s happening, how we can prevent it, and what we can do to intervene,” said Kioka Walcott, UVA’s Cancer Registry supervisor. For example, UVA collects data on patient demographics, medical history, cancer information (type and stage of cancer, date of diagnosis, and other characteristics), and treatment.
Cancer registries also play an important role in disease surveillance and understanding local, regional and national trends and survival rates, according to the National Cancer Institute. They help researchers and public health officials understand big questions like, “Which groups of people are more likely to develop one type of cancer?” or “Are cancer rates increasing or decreasing?” This can help them plan cancer prevention programs and influence future scientific research.
According to the National Cancer Registrars Association, there are three types of cancer registries. Hospital-based registries collect and store detailed information on patients diagnosed and/or treated at a specific healthcare facility. Doctors then have access to robust information that can help them determine the best treatment. UVA, which maintains a hospital-based registry, is required by law to report information on cancer cases to state and national databases.
Population-based registries maintain data on cancer patients within a specific geographic area to identify and monitor trends in cancer over time. There are also special-purpose registries which gather information on a specific type of cancer, like the LGL Leukemia Registry at UVA.
Like all healthcare and patient data, patient privacy and confidentiality is important. Information is covered by HIPAA laws, said Walcott, so it isn’t shared. It’s collected and stored in secure cancer registries.
What’s the Role of a Cancer Registrar?
Cancer registrars are responsible for keeping cancer registries up to date and analyzing the data that’s collected. “Cancer registrars are the data analysts of oncology data,” explained Walcott. They often serve as a resource for doctors, researchers and other healthcare professionals and help spot trends.
At UVA Cancer Center, a team of nine cancer registrars are responsible for updating and maintaining the hospital-based cancer registry. Once a patient is diagnosed with cancer or receives treatment, cancer registrars examine medical files and document their information in the cancer registry. Registrars follow up with patients on a yearly basis to update records on patient health, treatment and any recurrence.
While cancer registrars are behind the scenes, they play an important role in the medical and public health communities. “You are contributing to the cure and prevention of cancer,” said Walcott. “That’s very fulfilling.”
Learn more about UVA's important contributions to cancer research.Learn More