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Consensus definition of essential, optimal, and suggested components of a pediatric Sickle Cell Disease Center
  • +15
  • Monica L. Hulbert,
  • Deepa Manwani,
  • Emily Meier,
  • Ofelia Alvarez,
  • R. Clark Brown,
  • Michael U. Callaghan,
  • Andrew Campbell,
  • Thomas Coates,
  • Melissa Frei-Jones,
  • Jane Hankins,
  • Matthew Heeney,
  • Lewis Hsu,
  • Jeffrey Lebensburger,
  • Charles Quinn,
  • Nirmish Shah,
  • Kim Smith-Whitley,
  • Courtney Thornburg,
  • Julie Kanter
Monica L. Hulbert
Division of Pediatric Hematology/Oncology Washington University in St Louis School of Medicine St Louis MO

Corresponding Author:monicahulbert@wustl.edu

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Deepa Manwani
Children's Hospital at Montefiore
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Emily Meier
Indiana Hemophilia and Thrombosis Center Inc
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Ofelia Alvarez
University of Miami School of Medicine
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R. Clark Brown
Children's Healthcare of Atlanta Inc
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Michael U. Callaghan
Division of Pediatric Hematology/Oncology Children’s Hospital of Michigan Detroit MI
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Andrew Campbell
Children's National Hospital
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Thomas Coates
Children's Hospital Los Angeles Children's Center for Cancer and Blood Diseases
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Melissa Frei-Jones
Division of Pediatric Hematology/Oncology University of Texas School of Medicine-San Antonio San Antonio TX
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Jane Hankins
Department of Hematology St Jude Children’s Research Hospital Memphis TN
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Matthew Heeney
Dana Farber/Boston Children’s Cancer and Blood Disorders Center Department of Pediatrics Harvard Medical School Boston MA
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Lewis Hsu
University of Illinois Chicago College of Medicine
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Jeffrey Lebensburger
Division of Pediatric Hematology/Oncology University of Alabama at Birmingham Birmingham AL
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Charles Quinn
Cincinnati Children's Hospital Medical Center
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Nirmish Shah
Duke University School of Medicine
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Kim Smith-Whitley
The Children's Hospital of Philadelphia
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Courtney Thornburg
Rady Children's Hospital San Diego
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Julie Kanter
Division of Hematology University of Alabama at Birmingham Birmingham AL
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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), ten 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.
18 Jul 2022Submission Checks Completed
18 Jul 2022Assigned to Editor
18 Jul 2022Submitted to Pediatric Blood & Cancer
18 Jul 2022Reviewer(s) Assigned
01 Aug 2022Review(s) Completed, Editorial Evaluation Pending
01 Aug 2022Editorial Decision: Revise Minor
09 Aug 2022Submission Checks Completed
09 Aug 2022Assigned to Editor
09 Aug 20221st Revision Received
12 Aug 2022Review(s) Completed, Editorial Evaluation Pending
12 Aug 2022Editorial Decision: Accept
Jan 2023Published in Pediatric Blood & Cancer volume 70 issue 1. 10.1002/pbc.29961