Sickle cell disease summit: from clinical and research disparity to action.
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.
Hassell
Kathryn
K
Division of Hematology, Department of Medicine, University of Colorado Denver Health Sciences Center, Denver, CO, USA. kathryn.hassell@uchsc.edu
Pace
Betty
B
Wang
Winfred
W
Kulkarni
Roshni
R
Luban
Naomi
N
Johnson
Cage S
CS
Eckman
James
J
Lane
Peter
P
Woods
William G
WG
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