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

National Academies of Sciences, Engineering, and Medicine

doi:10.17226/25632

Consensus Study Report

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Addressing Sickle Cell Disease

A Strategic Plan and Blueprint for Action

(2020)

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.

Contributor(s): National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action; Marie McCormick, Henrietta Awo Osei-Anto, and Rose Marie Martinez, Editors

RESOURCES AT A GLANCE

Overview of Recommendations and Strategic Plan

Topics

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. https://doi.org/10.17226/25632.

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Publication Info

522 pages | 6 x 9 |

ISBNs:

Paperback: 978-0-309-66960-3
Ebook: 978-0-309-66963-4

DOI: https://doi.org/10.17226/25632

Chapters		skim
Front Matter	i-xxvi
Summary	1-18
1 Introduction	19-46
2 Societal and Structural Contributors to Disease Impact	47-80
3 Screening, Registries, and Surveillance	81-122
4 Complications of Sickle Cell Disease and Current Management Approaches	123-184
5 Health Care Organization and Use	185-248
6 Delivering High-Quality Sickle Cell Disease Care with a Prepared Workforce	249-302
7 Developing and Delivering the Next Generation of Therapies	303-352
8 Community Engagement and Patient Advocacy	353-396
9 Strategic Plan and Blueprint for Sickle Cell Disease Action	397-418
Appendix A: Public Meeting Agendas and Submissions to the Committee	419-426
Appendix B: Literature Search Terms and Strategy	427-432
Appendix C: Committee and Staff Biographies	433-440
Appendix D: Newborn Screening Results Reporting Protocols for Sickle Cell Disease and Sickle Cell Trait	441-444
Appendix E: Sickle Cell Data Collection Program	445-448
Appendix F: Georgia Comprehensive Sickle Cell Center: A Case Study	449-450
Appendix G: Emory Adult Cystic Fibrosis Program	451-452
Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs	453-458
Appendix I: Select Treatments Currently Under Development for Sickle Cell Disease	459-468
Appendix J: Other Training Models for Hematologists	469-474
Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States	475-480
Appendix L: Summary Table of Strategic Plan and Blueprint for Sickle Cell Disease Action	481-488
Appendix M: Summary Table of Sickle Cell Trait Discussion in Report	489-490
Appendix N: Glossary	491-496

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