05:59pm Thursday 19 October 2017

NHLBI and CDC Launch Registry and Surveillance System in Hemoglobinopathies

The Registry and Surveillance System in Hemoglobinopathies (RuSH), a four-year pilot project, will create ways to learn more about the extent of hemoglobinopathies in the United States. As part of the project, the CDC has developed cooperative agreements to create surveillance programs with state health departments in California, Florida, Georgia, Michigan, North Carolina, and Pennsylvania.

Data collected from the $27 million RuSH project will help researchers determine the most effective plans for developing future hemoglobinopathy registries. Research findings based on data from disease registries may provide new ideas for drug therapies and can spur the development of tests that can determine severity of diseases over the lifespan.

Through surveillance under the initial phase of the RuSH pilot program, researchers hope to determine the prevalence of the hemoglobinopathies among screened newborns and patients not identified through newborn screening. The data should help determine the prevalence of the various conditions. The research will also help describe the demographic characteristics of individuals with these conditions as well as their geographic distribution. Researchers will also examine the existing health-care resources available for patients with hemoglobinopathies.

ASH has worked closely with the NHLBI and CDC to strengthen their hemaglobinapothies-related programs and will continue to support efforts related to the RuSH program.

Visit the NIH Web site for additional details about the RuSH program.


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