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UVA Comprehensive Cancer Center

Cancer Registry

The UVA Cancer Registry, currently under Cancer Quality and Program Management of the Oncology Service Line, collects and reports cancer-related data in accordance with the American College of Surgeons Commission on Cancer (ACoS CoC) requirements. Under the Code of Virginia, section 32.1-70, hospitals are required to “make available to the Commissioner or his agents information on patients having malignant tumors or cancers” and the information is to be part of a statewide cancer registry.

This image shows an oval at the bottom labelled UVA Cancer Registry. There are 5 arrows that point to this oval, each arrow stems from a separate network. From left to right, they are: AJCC, American Joint Committee on Cancer, COC, Commission on Cancer, SEER, NAACCR, North American Association of Central Cancer Registries, and the Virginia Cancer Registry. A sixth arrow points from NAACCR to the Virginia Cancer Registry. A seven arrow points from NPCR, National Program of Cancer Registries to the Virginia Cancer Registry.

The UVA Cancer Registry is made up of a team of Certified Oncology Data Specialist (ODS, formerly known as Certified Tumor Registrars or CTRs) who prepares an abstract on each reportable condition/cancer from the patient’s medical record. The abstracts are housed in the cancer registry database and contains demographic, diagnostic, staging, treatment, and follow-up/outcomes information on patients. Information in abstracts are summarized and coded according to rules established by state-level and national-level standard setters (Virginia Cancer Registry, ACoS CoC, SEER, and American Joint Committee on Cancer).

How to access Cancer Registry data for your research

Cancer patients who are diagnosed and/or receive treatments at UVA health are reported. We also collect patients who receive subsequent treatment at UVA. Approximately 100-200 data elements are collected per patient depending on the cancer type. And since 2015, ~4,500 cases are abstracted per year.

This image has 4 lists of information along with a flow diagram. The first list of information is called Data Request Services. There are two types here. One is called numerical and the other is called patient list. Under numerical, there are two bullet points. The first is: estimate of patient population for potential study. The second is: patient population by demographic groups for grants. Under patient list, there are four bullet points. The first is: CoC Survey – accession list, standards. The second is: NAPBC – de-identified accession list(s). The third is: List of patients provided by requester – information on patients queried from registry database. The fourth is: criteria from requester – list of patients pulled from registry database. The second list of information is called Clinical Data Elements per patient, Patient demographics and follow-up. This list has PHI, race, age at diagnosis, primary payer, smoking history, vital status, and date of last contact/death. The third list of information is called Clinical Data Elements per patient, Neoplasm information. This list has class of case, date of diagnosis, sequence, primary site, laterality, histology, behavior, grade, stage, mets at diagnosis, diagnostic confirmation, and site specific factors. The fourth list is called Clinical Data Elements per patient, First Course Treatment. This list has treatment status, types of first course of therapy (surgery, radiation, chemo, hormone, immunotherapy, other). The flow diagram shows a box labelled EPIC and a box labelled Other Facility Registrars pointing to a box labelled Manual References which points a circle named Data. Next to Data there is an oval labelled Registry Abstracting Software.

This data is now available for self-serve and free browsing through a platform called TriNetX, which is supported by UVA’s participation in iTHRIV. TriNetX includes Cancer Registry data for diagnosis year 2018 and later and is updated with this data on a monthly basis. To request access, please email researchdata@uvahealth.org.

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