National Academies Press: OpenBook

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)

Chapter: Appendix M: Summary Table of Sickle Cell Trait Discussion in Report

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Suggested Citation:"Appendix M: Summary Table of Sickle Cell Trait Discussion in Report." 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. doi: 10.17226/25632.
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Appendix M

Summary Table of Sickle Cell Trait Discussion in Report

Chapter Description of Information
3 Newborn screening and sickle cell trait (SCT)
Communicating results from screening
State-level approaches to screening
Role of genetic counseling
Reproductive decision making
Screening of subpopulations (National Collegiate Athletic Association
athletes; service members)
4 SCT health complications
Future research needed for SCT
Need for a national approach to SCT
Conclusion 4-4
Recommendation 4-4
5 Services for individuals living with SCT
Sickle Cell Disease Treatment Demonstration Program
6 Importance of using appropriate screening test
Lack of quality indicators or consensus guidelines for genetic counseling
Need for national reporting guidelines
Committee proposed SCT core measures set
8 Relevant federal agencies involved with SCT activities
Confusion between diagnoses of SCT and sickle cell disease
Community-based organization services available for individuals living with SCT
Public education and awareness about SCT
Suggested Citation:"Appendix M: Summary Table of Sickle Cell Trait Discussion in Report." 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. doi: 10.17226/25632.
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Suggested Citation:"Appendix M: Summary Table of Sickle Cell Trait Discussion in Report." 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. doi: 10.17226/25632.
×
Page 489
Suggested Citation:"Appendix M: Summary Table of Sickle Cell Trait Discussion in Report." 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. doi: 10.17226/25632.
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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.

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