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Comparative Effectiveness Research
Data Collection Enhancement Project

In 2009, the Institute of Medicine’s report, Initial National Priorities for Comparative Effectiveness Research, identified seven priorities focused on cancer outcomes. To measure these outcomes, data systems must provide timely, high-quality data on treatment regimens, co-morbidity, 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 co-morbidities, height, weight, smoking status, and detailed staging. The cancer incidence data is 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.

In addition, six special projects were funded to explore innovative public health applications for cancer registries—

  • Improving race and ethnicity data.
  • Developing innovative uses of cancer registry data.
  • Implementing electronic reporting from clinic and physician offices.

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.

States Participating in the CER Data Collection Enhancement Project

Map of the United States showing States Participating in the C.E.R. Data Collection Enhancement Project.
Color on Map Project or Activity States
Dark Red Core Activities Only Alaska, California, Florida, Idaho, Louisiana, New Hampshire, North Carolina, and Texas
Gold Special Project and Core Activities Colorado and Rhode Island
Dark Green Special Project Only Kentucky, Massachusetts, and Missouri
 
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