Skip to main content

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

View Cover

Addressing Sickle Cell Disease

A Strategic Plan and Blueprint for Action(2020)
Purchase Options
Purchase Options MyNAP members save 10% online. Login or Register



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.


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.

Import this citation to:

Publication Info

522 pages |6 x 9
  • Paperback: 978-0-309-66960-3
  • Ebook: 978-0-309-66963-4

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 453-458
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

Copyright Information

The National Academies Press and the Transportation Research Board have partnered with Copyright Clearance Center to offer a variety of options for reusing our content. You may request permission to:

  • Republish or display in another publication, presentation, or other media
  • Use in print or electronic course materials and dissertations
  • Share electronically via secure intranet or extranet
  • And more

For most Academic and Educational uses no royalties will be charged although you are required to obtain a license and comply with the license terms and conditions.

Click here to obtain permission forAddressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.

Translation and Other Rights

For information on how to request permission to translate our work and for any other rights related query please click here. Customer Service

For questions about using the service, please contact:

Copyright Clearance Center
22 Rosewood Drive
Danvers, MA 01923
Tel (toll free): 855/239-3415 (select option 1)

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