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Addressing Sickle Cell Disease - A Strategic Plan and Blueprint for Action (Paperback)
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Addressing Sickle Cell Disease - A Strategic Plan and Blueprint for Action (Paperback)
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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. Table of Contents Front Matter 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 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
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