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reference materials

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

key information

source: National Academies of Sciences, Engineering, and Medicine

year: 2020


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: 1 – Introduction

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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