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NCRA's "Mountains of Change" Part I: Precision Medicine & Genetics
blog takeaway

By Karen Mordarski, RHIT, CTR, Cancer Information Specialist

NCRA’s 2019 Educational Conference in Denver, Colorado, was built around the theme, “Navigating the Mountains of Change.” And during the four days of sessions I attended, three “mountains” stood out:

Precision Medicine & Genetics | Artificial Intelligence | Biomarkers

Today, I will share my notes from an NCRA session on the first of these mountains: Precision Medicine & Genetics. Kathleen Barnes, PhD, gave an “Update on Genetics and Precision Medicine,” that I found to be a great introduction to the topic. Before I get to my notes on her presentation, let’s look at how we got to such a dramatic turning point for healthcare…


There is no doubt we are in a new era for healthcare. The 2018 Commission on Cancer and National Cancer Database standards, as well as the adoption of the STORE 2018 Manual, signaled the need for a collaborative approach from cancer registrars, surveillance leaders and clinicians who care for cancer patients. Additionally, the initiation of the AJCC Cancer Staging Manual, 8th Edition, new SSDIs and changes to the grading system reflect the current oncologic framework for prognostic standard of care and cancer registry reporting.


So, what is precision medicine? Precision, or personalized, medicine is all about risk assessment and leveraging genetic testing to learn about an individual’s predisposition to a disease. In the oncology industry, predictive testing means patients benefit from more targeted therapies, as well as a decrease in cancer incidence and mortality. Precision medicine includes prevention, specific data collection, treatment intervention and early detection of the disease at the molecular level. By utilizing precision medicine, healthcare providers can provide individualized treatment for patients and improve outcomes through targeted genetic and pharmacogenomic therapy, a subset of personalized medicine that provides the patient with the right drug, at the right dose, at the right time to minimize adverse drug effects and toxicities seen in patients with genetic variability.


Genetics is certainly a hot topic in healthcare right now. The American College of Medicine and Genetics established “ACMG 59 Genes” guidelines for genes correlated with a high risk of acquiring certain diseases. The guidelines only affects 1 to 3% of the patient population, but calculate to a larger percent of the patient population associated with cancer, cardiomyopathy and Lynch Syndrome. Additionally, many Americans are interested in their own genetic background - 26 million Americans have undergone consumer market reporting through “Ancestry.com” and “23andMe” testing. Physicians refer to this as “recreational genetics” because it is not performed in the clinical setting and when patients come to their medical providers with this genetic information, their providers can’t act on it.


The future of precision medicine is with biobanks located across the U.S. and clinical research studies patients voluntarily participate in every day. Barnes’ presentation taught me we are definitely headed in the right direction! Biobanks at academic institutions are getting larger and more diverse in their representation of genetic ethnicity populations. And technological advancement are allowing clinicians to digest valuable research data that allows for early detection of many diseases, including cancer. As a CTR who knows better data saves lives™, I am excited by the potential of precision medicine and genetic testing to help improve the lives of cancer patients in so many ways.

Did you attend this year’s NCRA educational conference? What were your key takeaways? Check back soon for part two of my series on NCRA’s mountains of change.

Interested in learning how CHAMPS Oncology can help your cancer program navigate recent industry changes? Contact us.


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About the Author

Karen Schmidt, CTR

Karen Schmidt

17+ Years of Cancer Registry Experience

ASK ME ABOUTMaximizing Registry Data for Administrative Planning, Migration Analysis & Financial Impact, Streamlining Registry Processes, Cancer Program Standards

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