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Oncology Data Specialists (ODS) are, as stated by the National Cancer Registrars Association (NCRA): “… data information specialists that capture a complete history, diagnosis, treatment, and health status for every cancer patient in the U.S. The curated data provides essential information to researchers, healthcare providers, and public health officials to better monitor and advance cancer treatments, conduct research, and improve cancer prevention and screening programs.

In recognition of February’s National Cancer Prevention and Gallbladder/Bile Duct Cancer Awareness Month, along with our continued effort to help shine a light on the benefits of cancer registries we will focus on risk factors and preventative measures data items collected by ODS professionals for Gallbladder and Bile Duct Cancers.


ODSs collect standard data items related to risk factors for gallbladder/bile duct cancer including: demographics (including sex, females are at a 4-times greater risk for gallbladder cancer), substance use (tobacco, alcohol (an increased risk for both gallbladder/bile duct cancer), drugs), occupation (to document possible exposure to carcinogens), personal history (of gallbladder/bile duct cancer), family history (of gallbladder/bile duct cancer, which can be qualifying factors for genetic testing) and comorbidities to name a few.


Preventative measures for gallbladder and bile duct cancers focus on maintaining a healthy weight, eating a healthy diet, staying physically active, and avoiding or limiting alcohol consumption. This information is collected by the ODS in the comorbidities and text fields.


Once a person is diagnosed with gallbladder/bile duct cancer, ODS professionals collect data items on the treatment in both coded and descriptive-text formats. Specific data items that are coded are:  surgeries(removals), palliative care (duct stent/bypass/ablations), chemotherapy (Transarterial chemoembolization (TACE), for bile duct only), targeted therapies (FGFR2 inhibitors and IDH1 inhibitors for bile duct only; for gallbladder, targeted-therapy clinical trials only), immunotherapy (Keytruda for treatment of both gallbladder and bile duct cancer). Other cancer-directed therapy (alcohol embolization for treatment of both gallbladder and bile duct cancer) information is also collected. In addition to targeted therapies, genetics can play a role in treatment planning.


Family genetics and tumor genetics testing can be conducted, with the results being utilized for directing the treatment plan for gallbladder and bile duct cancer. One hereditary cancer syndrome that increases the risk of bile duct cancer is Lynch Syndrome which is caused by mutations in any of the mismatch repair genes (MLH1, MSH2, MSH6, PMS2, and EPCAM). Gallbladder and bile duct cancer tumor genetics include changes in TP53. Other gene mutations that may play a role are KRAS, BRAF, PIK3CA, HER2, and ALK. Currently cancer registries have a dedicated field to capture mismatch repair protein results for colorectal cancers only, although we see the test being run for many other cancers and are collecting this information within the text portion of the abstract.


Cancer registry data, collected by ODS professionals, can be used to show efficacy of screening and treatment modalities. Federal and State agencies use cancer statistical data to determine the need for funding to support cancer prevention and treatment in targeted communities.