Researchers in California and five other states are developing a new surveillance system to determine the number of patients diagnosed with sickle cell disease, thalassemia and other inherited blood disorders known as hemoglobinopathies.
Data collected through the registry will be used to improve medical and social services and to improve care for patients diagnosed with such blood disorders. Such goals are unattainable without the registry because of current health-care informational gaps, according to the release:
While all states now test newborns for some of these diseases, there is no system to track the diseases nationally. In addition, patients born before screening programs began or those who have immigrated to the United States are not tracked. These statistical gaps make it difficult to know the true impact of hemoglobinopathies in this country...
...Through surveillance under the initial phase of the 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.
The four-year $27 million pilot project is being funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health.
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