title: Sickle cell disease summit: from clinical and research disparity to action.
abstract: The American Society of Pediatric Hematology/Oncology Sickle Cell Summit brought together a broad range of constituencies to identify a unified approach to healthcare and research disparities for sickle cell disease. Recommendations included the following: (1) speak with a unified voice representing all constituencies; (2) optimize access to care from knowledgeable health care providers and create a medical home for all individuals with the disease; (3) utilize population-based surveillance to measure outcomes; (4) develop overall approaches to basic, translational, clinical, and health services research; (5) enhance the community role in advocacy, education, service, and fundraising. Taskforces were identified to effect implementation.
authors.affiliation: Division of Hematology, Department of Medicine, University of Colorado Denver Health Sciences Center, Denver, CO, USA. kathryn.hassell@uchsc.edu
authors.forename: Kathryn
authors.initials: K
authors.lastname: Hassell
authors.forename: Betty
authors.initials: B
authors.lastname: Pace
authors.forename: Winfred
authors.initials: W
authors.lastname: Wang
authors.forename: Roshni
authors.initials: R
authors.lastname: Kulkarni
authors.forename: Naomi
authors.initials: N
authors.lastname: Luban
authors.forename: Cage S
authors.initials: CS
authors.lastname: Johnson
authors.forename: James
authors.initials: J
authors.lastname: Eckman
authors.forename: Peter
authors.initials: P
authors.lastname: Lane
authors.forename: William G
authors.initials: WG
authors.lastname: Woods
mesh_terms: D000755:Anemia, Sickle Cell / Q000628:therapy*; D003256:Community Participation; D019317:Evidence-Based Medicine; D006292:Health Priorities; D006297:Health Services Accessibility; D054625:Healthcare Disparities; D006801:Humans; D014481:United States