@article{a8d5f317015d4fcc8fe6ce1b2bce7f00,
title = "Consensus definition of essential, optimal, and suggested components of a pediatric sickle cell disease center",
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.",
keywords = "comprehensive care, comprehensive center, guideline-based care, implementation, sickle cell disease",
author = "Hulbert, {Monica L.} and Deepa Manwani and Meier, {Emily Riehm} and Alvarez, {Ofelia A.} and Brown, {R. Clark} and Callaghan, {Michael U.} and Campbell, {Andrew D.} and Coates, {Thomas D.} and Frei-Jones, {Melissa J.} and Hankins, {Jane S.} and Heeney, {Matthew M.} and Hsu, {Lewis L.} and Lebensburger, {Jeffrey D.} and Quinn, {Charles T.} and Nirmish Shah and Kim Smith-Whitley and Courtney Thornburg and Julie Kanter",
note = "Funding Information: M. L. H. is a consultant for bluebird bio and Global Blood Therapeutics, has research funding to the institution from Global Blood Therapeutics and Forma Therapeutics, and is Scientific Executive Committee co‐chair for the Sickle Cell Transplant Advocacy and Research Alliance. M. L. H.{\textquoteright}s spouse has employment with Pfizer, Inc. D. M. is a consultant for Global Blood Therapeutics, Novartis, and Pfizer. E. R. M. is employed with Global Blood Therapeutics. O. A. A. is an advisory board member for Global Blood Therapeutics and Novartis. R. C. B. is employed by Global Blood Therapeutics, has been a consultant for Imara, Novartis, and Novo Nordisk, and has had research funding from Global Blood Therapeutics, Imara, Novartis, FORMA Therapeutics, and Pfizer. M. U. C. is employed with Agios Pharmaceuticals. A. D. C. is a consultant for Agios Pharmaceuticals, Forma Therapeutics, Global Blood Therapeutics, and Novartis. T. D. C. is a consultant for Vifor, Forma Therapeutics, Chiesi, Novartis, bluebird bio, and Agios Pharmaceuticals. M. J. F. has no conflict of interest. M. M. H. is a consultant for Vertex/CRISPR Therapeutics, Novartis, AstraZeneca, FORMA Therapeutics, Pharmacosmos, ORIC Pharmaceuticals, and bluebird bio. L. L. H. is a consultant for DuPont/Nemours Children's Hospital, Hilton Publishing Co, Westat, Dispersol, has research grants to institution from Global Blood Therapeutics, Forma Therapeutics, Cyclerion, and Imara, and is on a Data Safety Monitoring Board for Aruvant. J. S. H. is a consultant for Global Blood Therapeutics, FORMA Therapeutics, and CVS Health. J. D. L. is a consultant for Agios, Forma Therapeutics, Novartis, and Bioproducts Laboratory. C. T. Q. has research funding from Emmaus Medical, Merck, and Aruvant. N. S. is a consultant for Global Blood Therapeutics, Novartis, FORMA Therapeutics, Agios Pharmaceuticals, Emmaus, is a speaker for Global Blood Therapeutics, Novartis, Emmaus, Alexion, and hasresearch funding from Global Blood Therapeutics. K. S. W. is employed with Global Blood Therapeutics. C. T. is on a Data Safety Monitoring Board for bluebird bio. J. K. is a consultant for Novartis, Fulcrum Therapeutics, Graphite Bio, and ORIC Pharmaceuticals and is on a Data Safety Monitoring Board for NovoNordisk and Magenta. Publisher Copyright: {\textcopyright} 2022 Wiley Periodicals LLC.",
year = "2023",
month = jan,
doi = "10.1002/pbc.29961",
language = "English (US)",
volume = "70",
journal = "Medical and Pediatric Oncology",
issn = "1545-5009",
publisher = "Wiley-Liss Inc.",
number = "1",
}