The U.S. Department of Health and Human Services (HHS) added severe combined immunodeficiency (SCID), a PI that is typically fatal unless treated in infancy, to the Recommended Uniform Screening Panel (RUSP) in 2010, but it took eight years before all states implemented newborn screening (NBS) for the condition. What accounted for the seemingly
Read MoreSCID Compass recently convened a panel of experts to discuss chimerism—an often daunting and confusing term—and how it plays a role in the recovery of babies with severe combined immunodeficiency (SCID) who receive bone marrow transplants (BMT). “What is chimerism?,” moderated by Dr. Ami Shah from the Stanford University School of Medicine,
Read MoreThe types of uncertainty parents face when their child is diagnosed with and treated for severe combined immunodeficiency (SCID) is the focus of a research paper recently published in The European Journal of Human Genetics. “Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn
Read MoreAfter a baby is born with severe combined immunodeficiency (SCID), parents may be unsure how to proceed with family planning. They may have questions, such as: Will our other children have SCID? Is having more children the right decision for us? Who can we turn to for guidance on these topics? A video created for IDF’s SCID Compass program by
Read MoreUpdate: Families of babies born with Artemis-deficient severe combined immunodeficiency (SCID) who don’t respond well to standard bone marrow transplant (BMT) treatment may consider pursuing a more effective treatment for their infants – gene therapy. A recently published study by Dr. Morton Cowan, a renowned SCID specialist and immunologist at
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