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Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action
source: National Academies of Sciences, Engineering, and Medicine
year: 2020
summary/abstract:This consensus study report was commissioned by the Office of Minority Health at the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services to provide a comprehensive approach to the management and potential interventions for sickle cell disease (SCD), a genetic condition affecting approximately 100,000 people in the United States and millions worldwide. The report sets forth a substantial agenda beginning with the important need for information across the life span to characterize the trajectory of SCD and the antecedents of later complications.
Chapter: 2 – Societal and Structural Contributors to Disease Impact
Chapter: 3 – Screening, Registries, and Surveillance
Chapter: 4 – Complications of Sickle Cell Disease and Current Management Approaches
Chapter: 5 – Health Care Organization and Use
Chapter: 6 – Delivering High-Quality Sickle Cell Disease Care with a Prepared Workforce
Chapter: 7 – Developing and Delivering the Next Generation of Therapies
Chapter: 8 – Community Engagement and Patient Advocacy
Chapter: 9 – Strategic Plan and Blueprint for Sickle Cell Disease Action
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.