Care and outcomes for individuals living with sickle cell disease (SCD) vary across institutions and communities. The Hemoglobinopathy Learning Collaborative (HLC) seeks to improve outcomes across the life course through improvement science. Faculty identified five key drivers of improved outcomes: a strong community network; knowledgeable, proactive individuals, families and providers; reliable identification and follow-up; seamless co-management between primary and specialty care; and appropriate treatment for acute episodes. Using a modified Delphi process, we selected improvement measures aligned with the drivers. Data are collected via a Web-based system linked to a reporting portal.
ASJC Scopus subject areas
- Public Health, Environmental and Occupational Health