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Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed. Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.
Contents
- The National Academies of SCIENCES • ENGINEERING • MEDICINE
- COMMITTEE ON ADDRESSING SICKLE CELL DISEASE: A STRATEGIC PLAN AND BLUEPRINT FOR ACTION
- Reviewers
- Acknowledgments
- Preface
- Acronyms and Abbreviations
- Summary
- 1. Introduction
- 2. Societal and Structural Contributors to Disease Impact
- 3. Screening, Registries, and Surveillance
- 4. Complications of Sickle Cell Disease and Current Management Approaches
- 5. Health Care Organization and Use
- 6. Delivering High-Quality Sickle Cell Disease Care with a Prepared Workforce
- GUIDELINES FOR HIGH-QUALITY SCD CARE
- PATIENT-CENTERED DIMENSIONS OF HIGH-QUALITY CARE
- PROMOTING UPTAKE OF RECOMMENDATIONS FOR SCD CARE
- QUALITY INDICATORS FOR SCT AND GENETIC COUNSELING FOR SCD AND SCT
- SUMMARY
- THE AVAILABILITY OF A TRAINED AND PREPARED WORKFORCE
- TRAINING THE NEXT GENERATION OF SCD CARE PROVIDERS
- CONCLUSIONS AND RECOMMENDATIONS
- REFERENCES
- 7. Developing and Delivering the Next Generation of Therapies
- 8. Community Engagement and Patient Advocacy
- 9. Strategic Plan and Blueprint for Sickle Cell Disease Action
- Appendix A. Public Meeting Agendas and Submissions to the Committee
- Appendix B. Literature Search Terms and Strategy
- Appendix C. Committee and Staff Biographies
- Appendix D. Newborn Screening Results Reporting Protocols for Sickle Cell Disease and Sickle Cell Trait
- Appendix E. Sickle Cell Data Collection Program
- Appendix F. Georgia Comprehensive Sickle Cell Center: A Case Study
- Appendix G. Emory Adult Cystic Fibrosis Program
- Appendix H. Health Resources and Services Administration Sickle Cell Disease Programs
- Appendix I. Select Treatments Currently Under Development for Sickle Cell Disease
- Appendix J. Other Training Models for Hematologists
- Appendix K. Sickle Cell Community-Based Organizations and Patient Groups in the United States
- Appendix L. Summary Table of Strategic Plan and Blueprint for Sickle Cell Disease Action
- Appendix M. Summary Table of Sickle Cell Trait Discussion in Report
- Appendix N. Glossary
Suggested citation:
National Academies of Sciences, Engineering, and Medicine. 2020. Addressing sickle cell disease: A strategic plan and blueprint for action. Washington, DC: The National Academies Press. http://doi.org/10.17226/25632.
Digital Object Identifier: http://doi.org/10.17226/25632
Library of Congress Control Number: 2020943342
Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; www.nap.edu.
Printed in the United States of America
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