What proportion of MBC patients are de novo vs recurrent?
Currently, the Surveillance, Epidemiology and End Results Program, or SEER, provides extensive information regarding cancer diagnosis and some data regarding primary treatment and survival, but it does not collect information on metastatic cancer recurrence. The National Cancer Institute, which oversees the SEER registries, has identified this absence as a critical gap in cancer surveillance. Metastatic breast cancer patients and advocacy organizations have also called on the NCI to fill in these data holes by counting them in… and the call is being answered!
|Dr. Ruth Etzioni, a biostatistician in Fred Hutchinson Cancer Research Center’s Public Health Sciences Division, has received a five-year National Institutes of Health grant to advance the science of cancer surveillance by developing, validating and deploying a scalable, automated approach for identifying cancer recurrence.
“Cancer registries are very broad brush,” said Etzioni, regarding SEER. “They try to capture an unbiased snapshot of the population by tracking incidence, survival, mortality and trends over time. But the data collection is all built around a cancer diagnosis, not progression or recurrence. The infrastructure was not designed to collect that data. Right now, the registries are a glass half full.”
“We propose to focus on breast cancer due to its prevalence and burden in U.S. women and will build on the extensive expertise of our study team in breast cancer outcomes and recurrence ascertainment,” she said, adding that the grant will build on existing efforts by Fred Hutch epidemiologists Drs. Kathi Malone and Christopher Li to learn more about breast cancer survivorship.
In the first, two-year phase of the grant, Etzioni will use records from the Puget Sound SEER Registry’s Fred Hutch-housed Cancer Surveillance System, which tracks cancer diagnoses in 13 Washington state counties. Etzioni and her team will cull stage 1–3 breast cancer cases from the database then utilize electronic health records, claims data and patient-reported outcomes to fill in the missing recurrence information.
Etzioni’s team will then develop an algorithm that can be used to predict metastatic recurrence, validating its accuracy against a subset of the CSS cohort, which has collected real-time recurrence data from collaborator Swedish Cancer Institute.
Funding for the first phase is approximately $905,000. Funding for the second phase, which will extend over three years, is contingent on the progress of the first two years. The proposed budget is just over $2 million.
In that second phase, Etzioni and her team will use their newly created algorithm to identify metastatic breast cancer recurrence within the Kentucky Cancer Registry, yet another part of SEER, validating the algorithm’s accuracy against gold-standard recurrence data gleaned from the electronic health records of the University of Kentucky.
Etzioni said she believes she can develop a tool that can be deployed on a large scale and be scalable across SEER registries.
She also believes the multiple collaborations will set the stage for future research partnerships.
“There’s a national effort to expand collaborations across sites that house valuable data for cancer research,” she said. “We very much want to build bridges and be a part of that effort.”
In addition to Puget Sound and Kentucky payers and providers, Etzioni has tapped technology partner Sage Bionetworks, a nonprofit based at the Hutch, to create a direct-to-patient app to help facilitate patient-reported outcomes.
“Sage Bionetworks has deployed dozens of mobile apps for population health,” said Etzioni, adding that their technology will enable researchers to capture, manage and integrate patient data without sacrificing confidentiality.
“Folding recurrence data into the cancer registry is critical to improving cancer surveillance,” she said. “These data are necessary for understanding the burden of cancer and studying the effectiveness of cancer treatments outside of controlled clinical trials. This grant is a key step forward to making this vision a reality.”
— Diane Mapes / Fred Hutch News Service