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Newborn Screening Follow-Up Program

Colorado has offered universal newborn screening for sickle cell disease since 1978.  There are approximately 10-15 infants in Colorado and Wyoming each year identified with a hemoglobinopathy, most often sickle cell disease. 

Under contract with the Departments of Health for Colorado and Wyoming, the Colorado Sickle Cell Center is home to the Newborn Screening Hemoglobinopathies Follow-Up Program for all infants identified with any form of sickle cell disease or other hemoglobinopathies.  Follow-up includes direct notification and education of the family of the affected infant, including home visits; direct communication with and support of the infant’s primary care provider; and facilitation of referral to the Children’s Hospital for specialty care.

The Center also provides interpretation of the confirmatory testing performed on newborn screening samples by the University of Colorado Hospital Laboratory.    

Annually an additional 1,100 infants in Colorado and Wyoming are found to carry a hemoglobin trait, including sickle cell trait.  Providers are notified by letter once the presence of a hemoglobin trait is confirmed by the UCH Laboratory.  Phone contact with families of infants with sickle cell trait is attempted by Sickle Cell Center staff. 

The Center also offers four free sickle cell trait programs each year where parents and siblings of these newly identified infants may receive free testing to determine their own sickle cell trait status and receive subsequent counseling when appropriate.