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There is growing interest in the potential for clinical registries that can simultaneously support clinical care, quality improvement (QI), and research. This multi-purpose model is consistent with the Institute of Medicine’s (IOM’s) vision of a learning health system which “draws research closer to clinical practice by building knowledge development and application into each stage of the health care delivery process.” Gliklich et al. define a registry as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes.” Most pediatric chronic illnesses meet the National Institutes of Health's (NIH) definition for rare disease, and as such, multi-center registries are especially important to study and improve care for children with chronic diseases. (Full article...)
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