An Introduction to the Cancer Registry

Updated July 2018. The NCRA Education Foundation developed the Introduction to the Cancer Registry video presentations to help increase the number of students entering the cancer registry profession. The 12 presentations, Instructor's Guide, and other fact sheets are posted below.  All materials provide a glimpse into the roles and responsibilities of a cancer registrar, with the goal of inspiring them to take courses that will lead to a career as a cancer registrar and eventually to earn the ODS credential. For more information on how to become a cancer registrar and earn the ODS visit Paths to the Profession.

Special Note: NCRA has changed the name of its credential. Oncology Data Specialist (ODS) is the new name for the Certified Tumor Registrar (CTR) credential. Please note that any reference to the Certified Tumor Registrar (CTR) credential should be understood to be the Oncology Data Specialist (ODS) credential. For more information regarding the name change see the ODS Name Change.

Additional Resources:

• Instructor's Guide PDF

Cancer Registries

This introductory presentation will explain what a cancer registry is and its purpose. The roles and responsibilities of a cancer registrar will also be outlined, along with details on the cancer registration process. ​

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Abstracting

Abstracts organize and summarize information in a patient's medical record for each independent tumor The abstract includes patient data about demographics, diagnostic studies, cancer staging, treatment, and follow-up. When they create and update abstracts, cancer registrars must follow abstracting rules set by their individual state central registries. Hospitals that are accredited through the American College of Surgeons Commission on Cancer (ACoS/CoC) also follow ACoS/CoC abstracting rules and standards. Cancer registries transmit abstract data to their state’s cancer registry and, if the facility is ACoS/CoC-accredited, to the National Cancer Data Base (NCDB).

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Coding

Cancer registries use multiple coding applications and manuals to abstract their data. Some examples of these include the Facility Oncology Registry Data Standards (FORDS) which instruct abstractors on the types of tumors that require data collection and define how to accurately code most fields of an abstract. The International Classification of Disease for Oncology (ICD-O) is used to code the histology, behavior, and grade of the patient’s tumor. The American Joint Committee on Cancer (AJCC) Staging Manual allows for correct staging of the tumor, nodes, and distant metastasis.

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Cancer Staging

Staging is a common language developed by medical professionals to communicate information about cancer to others. It describes the severity of an individual’s cancer based on the extent at the original tumor (the “site”), and how far the cancer has spread. Two staging systems are discussed in this presentation: SEER Summary Stage and AJCC TNM Stage.

Cancer staging is important for several reasons. It helps medical professionals adequately assess the extent of cancer and determine the most appropriate treatment to cure the disease, decrease the tumor burden, or relieve symptoms. Staging is also used to estimate the prognosis for individual patients.

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Case Finding

Case finding is a system for locating every patient who is diagnosed and/or treated with a reportable diagnosis at a facility. All registries must perform case finding to ensure all applicable cases are reported. Almost all malignant cancer cases, as well as some benign central nervous system tumors, are required to be reported to the state. Cancer registries may use different source documents for case finding, but the procedures involved in case finding are similar. Case finding is essential for complete reporting.

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Patient Follow-Up

Follow-up provides ongoing surveillance to determine patient status. Specifically, registrars look for—and enter into a patient’s abstract—information about patient status, cancer status, recurrent disease, additional treatment, and new types of cancer the patient may have been diagnosed with. Cancer registrars perform follow-up for each patient on an annual basis.

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Data Submission

By law, all cancer registries must submit data to their state’s cancer registry. Additionally, hospital cancer programs accredited by the Commission on Cancer (CoC) submit their data to the National Cancer Data Base (NCDB) on an annual basis. Cancer registrars are essential to the data submission process. They compile the data and run edits to ensure there are no errors in the abstracts. Once the data is clean of errors, it is submitted electronically. No patient-identifying indicators are sent to NCDB.

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Confidentiality and Release Of Information

Cancer data is highly confidential, and it’s critical that all cancer registry staff maintain that confidentiality. Cancer registrars have access to patients’ medical records to transfer the information into registry databases. Cancer registry functions fall under the Operating Rules portion of HIPAA. These rules allow health care facilities to share the first course of treatment and follow-up of shared patients. 

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Cancer Committee

Commission on Cancer (CoC) standards help ensure the structures, processes, and outcomes necessary for the delivery of quality cancer care are in place for accredited hospital cancer programs. One component of that structure is the Cancer Committee. A Cancer Committee is a multidisciplinary leadership body that’s responsible and accountable for planning, implementing, and improving their facility’s cancer program activities.

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Cancer Conference (aka Tumor Board)

A Cancer Conference provides the opportunity to have a multidisciplinary discussion focused on current diagnoses and treatment standards, with patients’ well-being and care as the primary focus. During Cancer Conference meetings, oncologists, pathologists, radiologists, physicians, and other health care staff discuss actual patient cases—with the goal of determining the best treatment plan for the patient. Discussions cover each patient’s history of illness and their radiologic studies and pathology slides, cancer stage, prognostic factors, possible treatments, and clinical trial options.

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Quality

Quality is the ability of a product, service, or process to meet customers’ expectations and provide the intended value. High-quality cancer registry data are essential to accurately assess treatment outcomes and patient survival. In cancer registries, the term “quality improvements” refers to the actions taken, processes implemented, or services created to improve patient care. Cancer registrars work closely with a Quality Improvement Coordinator to develop and assist with quality studies, which measure the facility’s performance and outcome measures.

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Become a Certified Tumor Registrar

After students hear about the cancer registry field, they often ask how to become a cancer registrar. To take the Oncology Data Specialist (ODS) examination, candidates must meet education and experience eligibility requirements. The National Cancer Registrars Association Council on Certification has defined three routes for achieving this goal, which are discussed in the presentation. Oncology Data Specialists enjoy career opportunities in many settings, from hospitals and state registries to national cancer programs, and even consulting firms.

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