In our 2014 report (see Chapter 3) we highlighted gaps in knowledge about the true number of women and men living with metastatic breast cancer today; how many early-stage “survivors” go on to experience a recurrence; and what is the quantity of life, and quality of life, for people living with the disease by molecular subtype and varying treatment regimens.
1. Registry Patient-Generated Data Initiative
A partnership between the Alliance, the National Cancer Institute and the American Cancer Society office of epidemiology, the goal is to add patient-generated data (quality of life measures) into the SEER cancer registries
2. Statistical Modeling Initiative
An ultimate goal of the Alliance is to have recurrences of metastatic breast cancer tracked as part of the standard operation of cancer registries and SEER. While that may take years to accomplish, scientists at NCI are attempting a statistical model to estimate current information. Similar approaches have been tried in Australia.
We are working in partnership with NCI’s Surveillance Informatics Branch and Dr. Angela Mariotto toward a goal of better estimating the number of people living with metastatic breast cancer in the US today and better estimate the number of cases of early breast cancer that later relapse/recur and become metastatic.
3. Hospital Database & Registry Initiative
This initiative is an effort to understand the ‘registry data’ from individual hospitals and universities that treat large numbers of early and metastatic breast cancer patients. From these large datasets we may begin to understand the frequency of recurrence and possibly length of survival of metastatic breast cancer by breast cancer subtype. Data from individual hospitals is not truly representative of the entire population, it might be a good first step in increasing the information about the number of metastatic breast cancer cases and outcomes.