Enhancing cancer registry data for comparative effectiveness research (CER) project: overview and methodology
Journal of Registry Management
|November 25, 2014
Summary
The Centers for Disease Control and Prevention enhanced cancer registries to support comparative effectiveness research (CER). This initiative collected detailed treatment data for specific cancers to improve patient care quality assessment.
Area of Science:
- Public Health
- Cancer Epidemiology
- Health Services Research
Background:
- The Institute of Medicine's 2009 report highlighted national priorities for comparative effectiveness research (CER).
- Funding for CER became available in 2009 via the American Recovery and Re-investment Act, supporting infrastructure enhancements for population-based cancer registries.
- The Centers for Disease Control and Prevention (CDC) received funds to expand registry data collection for CER.
Purpose of the Study:
- To describe the methodology and work undertaken by the CDC and National Program of Cancer Registries (NPCR) specialized registries.
- To collect detailed first course of treatment data for breast, colon, and rectal cancers, and chronic myeloid leukemia (CML) diagnosed in 2011.
- To assess the potential role of population-based cancer registries in evaluating patient care quality and cancer control.
Main Methods:
- Establishment of 10 specialized NPCR registries to enhance data collection for all cancers.
- Targeted CER questions, including biomarker use and prognostic value, were addressed.
- Development of data collection tools, software modifications, and quality assurance protocols were implemented.
Main Results:
- Detailed data on the first course of treatment were collected for four specific cancer types.
- Population characteristics of the study cohort were analyzed.
- Strengths and limitations of using population-based cancer registries for CER were discussed.
Conclusions:
- Population-based cancer registries are valuable resources for supporting comparative effectiveness research.
- Enhanced data collection can improve the assessment of cancer patient care quality.
- Future research should leverage these registries for cancer control initiatives.
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