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

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Addressing Sickle Cell Disease

A Strategic Plan and Blueprint for Action (2020)
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Overview

Contributors

Description

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.

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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:
  • Prepublication: 978-0-309-68242-8
  • Paperback (forthcoming): 978-0-309-66960-3
DOI: https://doi.org/10.17226/25632
Contents

Table of Contents

skim chapter
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 453-456
Appendix I: Select Treatments Currently Under Development for Sickle Cell Disease 457-466
Appendix J: Other Training Models for Hematologists 467-472
Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States 473-478
Appendix L: Summary Table of Strategic Plan and Blueprint for Sickle Cell Disease Action 479-486
Appendix M: Summary Table of Sickle Cell Trait Discussion in Report 487-488
Appendix N: Glossary 489-496
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