A novel US-based grading system for disease severity in sickle cell disease: the Sickle Cell Outcome Grading System (SCOGS).
Publication/Presentation Date
6-1-2026
Abstract
Sickle cell disease is a haematological disorder marked by recurrent events and progressive organ dysfunction, yet a standardised framework to assess disease severity is lacking. We developed a novel US-based severity grading system through identification of sickle cell disease-related complications mapping all to the Common Terminology Criteria For Adverse Events and applying a five-level severity scale. A modified Delphi process involving 29 US-based sickle cell disease experts was conducted over three virtual rounds (from Oct 20 to Nov 8, 2023; from June 26 to Aug 1, 2024; and from Nov 6, 2024, to Jan 7, 2025), with the use of a 9-point Likert scale ratings and iterative feedback. An in-person consensus workshop was then held in Memphis, TN, USA on Jan 16-17, 2025. This workshop was funded by the project's NIH grant (1R01CA270157-01). The final classification includes 53 clinical outcomes, each with diagnostic criteria, grades, and temporal patterns. This standardised, consensus-driven system provides a new benchmark for assessing sickle cell disease severity, with applications in clinical trials, disease burden assessment, and predictive modelling.
Volume
13
Issue
6
First Page
418
Last Page
418
ISSN
2352-3026
Published In/Presented At
Aurora, T., Hodges, R., Wardell, J. R., Barton, M., Lipford, J., Takemoto, C. M., Betensky, M., Desai, P., Jacob, S. A., Rai, P., Strouse, J., Hsu, L. L., Azul, M., Hulbert, M., Wang, W., Talati, R., Liem, R., Alan, S., Klings, E., Appiah-Kubi, A., … Hankins, J. S. (2026). A novel US-based grading system for disease severity in sickle cell disease: the Sickle Cell Outcome Grading System (SCOGS). The Lancet. Haematology, 13(6), e418–e425. https://doi.org/10.1016/S2352-3026(26)00076-1
Disciplines
Business Administration, Management, and Operations | Health and Medical Administration | Management Sciences and Quantitative Methods
PubMedID
42242263
Department(s)
Administration and Leadership
Document Type
Article