Colorado hospital helps develop national standards for cognitive and developmental care in sickle cell disease
Children's Hospital Colorado
Aurora, Colo.
Children’s Hospital Colorado helped the National Alliance of Sickle Cell Centers develop new national standards to improve how developmental and cognitive challenges are identified and managed in people with sickle cell disease (SCD). Because care for SCD varies widely across locations and treatment centers, the new guidance aims to create more consistent, high-quality care nationwide.
"Our work is not only about establishing national standards for SCD care but also elevating the quality of that care across the board," said Alyssa Schlenz, PhD, lead author and chair of the NASCC neurocognitive workgroup. "We have a responsibility to examine every aspect of this disease and ensure each is fully and thoughtfully addressed, regardless of where patients receive care."
The recommendations recognize that individuals with SCD face an increased risk of developmental delays and cognitive difficulties, even without major neurological complications such as stroke. Experts emphasize that early identification is essential so patients can access support such as educational accommodations, therapies, and community resources that improve long-term outcomes and quality of life.