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Using LOINC and HL7 to standardize hemoglobinopathy screening result reporting.
Hemoglobinopathy screening is an integral part of newborn screening (NBS). It identifies infants with serious hemoglobin (Hb) disorders, such as sickle cell disease, in the first weeks of life. Different NBS programs use different methods for screening as well as different sets of controls, to the Hb types and disorders that can be presuptively identified based on those types are not consistent across labs. Even incases where two laboratories identify the same Hb, they might not report it in the same way. Our goal was to create a uniform method for electronically reporting NBS hemoglobinopathy results that would encompass the variation across programs. By collaborating with hemoglobin and NBS experts from multiple federal and state agencies, NBS programs, and laboratories, we devised a straightforward method for reporting that relies on reporting individual Hb types.