Comparative Effectiveness Research Data Collection Enhancement Project
In 2009, the Institute of Medicine’s report, Initial National Priorities for Comparative Effectiveness Research,External identified seven priorities focused on cancer outcomes. To measure these outcomes, data systems must provide timely, high-quality data on treatment regimens, comorbidity, prognostic biomarkers, and other determinants of cancer outcomes. Central cancer registries play a significant role in developing this data infrastructure.
In response to the need for data to support comparative effectiveness research (CER), or patient-centered outcomes research, the Agency for Healthcare Research and Quality (AHRQ) and CDC’s National Program of Cancer Registries (NPCR) developed a special data collection enhancement project to help answer specific CER questions through the development of analytic datasets.
Ten specialized cancer registries were funded to collect enhanced data to support CER. To ensure useful information is collected, CDC and AHRQ identified important CER questions. The specialized registries collected detailed treatment and biomarker data for breast, colon, and rectal cancers as well as chronic myeloid leukemia cases diagnosed in 2011. They also established sustainable procedures to gather more information on all cancer cases, like comorbidities, height, weight, smoking status, and detailed staging. The cancer incidence data are linked to census tract-level socioeconomic status variables, available through the U.S. Census Bureau, so researchers can describe detailed outcomes at the neighborhood level. Outcomes from the CER activities will include a dataset to be used for comparative effectiveness and other research.
Patient-Centered Outcomes Research Project
In 2013, five specialized cancer registries (Colorado, Louisiana, New Hampshire, Rhode Island, and Idaho) continued to collect CER data through a new Patient-Centered Outcomes Research (PCOR) project. These registries enhance CER datasets by collecting five years of follow-up, disease recurrence, progression, and vital status for colon, rectum, and breast cancer cases first diagnosed in 2011. These data are submitted to CDC each year as part of NPCR’s annual data submission process.
The PCOR project fulfills requirements to implement meaningful use reporting to central cancer registries. The project improves software and methods for management and consolidation of electronic data reported in real time from electronic health records and through data linkages. These data will be used to compare actual treatments delivered by stage, age, race, ethnicity, and socioeconomic status variables, and to assess the long-term outcomes of variations from recommended treatment approaches.
The data collected from this project will allow researchers to evaluate important CER questions in more detail. The experience gained and the methods developed will help NPCR-funded central cancer registries and contribute to national cancer surveillance and prevention goals.
- Chen VW, Eheman CR, Johnson CJ, Hernandez MN, Rousseau D, Styles TS, West DW, Hsieh M, Hakenewerth AM, Celaya MO, Rycroft RK, Wike JM, Pearson M, Brockhouse J, Mulvihill LG, Zhang KB. Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology.External Journal of Registry Management 2014;41(3):103–12.
- Karlitz JJ, Hsieh MC, Liu Y, Blanton C, Schmidt B, Jessup JM, Wu XC, Chen VW. Population-based Lynch syndrome screening by microsatellite instability in patients ≤ 50: prevalence, testing determinants and result availability prior to colon surgery.External American Journal of Gastroenterology 2015;110(7):948–955.