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Sickle cell disease summit: from clinical and research disparity to action
Kathryn Hassell1, Betty Pace, Winfred Wang
1Division of Hematology, Department of Medicine, University of Colorado Denver Health Sciences Center, Denver, CO, USA. kathryn.hassell@uchsc.edu
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.
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