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Despite universal newborn screening that detects the presence of sickle cell trait (SCT), only 16 percent of Americans with SCT know their status. To address this issue, in Ohio, in-person education is offered to caregivers of referred infants with SCT.
“Most people do not know their sickle cell trait status. When a newborn screening result shows that an infant has sickle cell trait, we are there to support the parents with education about SCT and its implications on reproductive health,” says Susan Creary, MD, hematologist at Nationwide Children’s Hospital. “But, to be effective, this education must be appropriate and meet the needs of the parents that we are educating.”
In a study published in Molecular Genetics & Genomic Medicine, Dr. Creary and her colleagues investigated the effectiveness of this standardized education at a single institution.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.