TY - JOUR
T1 - A novel US-based grading system for disease severity in sickle cell disease
T2 - the Sickle Cell Outcome Grading System (SCOGS)
AU - Aurora, Tarun
AU - Hodges, Renee
AU - Wardell, Joseph R
AU - Barton, Martha
AU - Lipford, Janna
AU - Takemoto, Clifford M
AU - Betensky, Marisol
AU - Desai, Payal
AU - Jacob, Seethal A
AU - Rai, Parul
AU - Strouse, John
AU - Hsu, Lewis L
AU - Azul, Melissa
AU - Hulbert, Monica
AU - Wang, Winfred
AU - Talati, Ravi
AU - Liem, Robert
AU - Alan, Sheinei
AU - Klings, Elizabeth
AU - Appiah-Kubi, Abena
AU - Minniti, Caterina
AU - Sisler, India
AU - McGann, Patrick
AU - Vissa, Madhav
AU - Nelson, Marquita
AU - Guarino, Stephanie
AU - Miller, Robin
AU - Azar, Sharl
AU - Badawy, Sherif
AU - Abrams, Christina
AU - Lanzkron, Sophie
AU - Saah, Elna
AU - Alvarez Nunez, Farranz
AU - El-Amin, Nadirah
AU - Bhakta, Nickhill
AU - Hankins, Jane S
N1 - Publisher Copyright:
© 2026 Elsevier Ltd.
PY - 2026/6
Y1 - 2026/6
N2 - 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.
AB - 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.
UR - https://www.scopus.com/pages/publications/105041129291
U2 - 10.1016/S2352-3026(26)00076-1
DO - 10.1016/S2352-3026(26)00076-1
M3 - Review article
C2 - 42242263
SN - 2451-9960
VL - 13
SP - e418-e425
JO - The Lancet Haematology
JF - The Lancet Haematology
IS - 6
ER -