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Updated: Aug 29, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center
Monica L Hulbert1, Deepa Manwani2, Emily Riehm Meier3
1Division of Pediatric Hematology/Oncology, Washington University in St. Louis School of Medicine, St. Louis, Missouri, USA.
Abstract:
Sickle cell disease (SCD) requires coordinated, specialized medical care for optimal outcomes. There are no United States (US) guidelines that define a pediatric comprehensive SCD program. We report a modified Delphi consensus-seeking process to determine essential, optimal, and suggested elements of a comprehensive pediatric SCD center. Nineteen pediatric SCD specialists participated from the US. Consensus was predefined as 2/3 agreement on each element's categorization. Twenty-six elements were considered essential (required for guideline-based SCD care), 10 were optimal (recommended but not required), and five were suggested. This work lays the foundation for a formal recognition process of pediatric comprehensive SCD centers.
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