Why US cancer registries need to be modernized to help us better understand cancer.
PUBLISHED November 02, 2019
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
I first heard about the National Cancer Institute's SEER (Surveillance, Epidemiology, and End Results) Registry in 2017 at Living Beyond Breast Cancer's annual conference for people with metastatic breast cancer. A cancer advocate, Katherine O'Brien, had put together an online petition for the Metastatic Breast Cancer Alliance asking that data collection be modernized. I was surprised when a couple of simple questions dramatically revealed whose stage 4 cancer was being "seen" by SEER and whose was not.
Hint: The vast majority was not being counted.
The reasons for this lack of data are complicated, but mostly come down to a lack of financial resources. SEER has been counting cancer by incidence, initial treatment, and mortality since 1973 in select populations of certain states. From this data, we receive the statistics about cancer from organizations like the American Cancer Society and the American Society of Clinical Oncology. The SEER registry provides a lot of interesting data that can be tracked by cancer type, stage at diagnosis, age, race, etc.
What you can't do is track recurrence information or know with certainty, within a few thousand individuals, how many people are living with metastatic breast cancer (or any type of metastatic cancer).
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