Screen LibraryAddressing sickle cell disease : a strategic plan and blueprint for action /
"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. Som...
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| Corporate Authors: | ; ; |
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| Group Author: | ; ; |
| Published: |
The National Academies Press,
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| Publisher Address: | Washington, D.C. : |
| Publication Dates: | [2020] |
| Literature type: | Book |
| Language: | English |
| Series: |
A consensus study report of the National Academies of Sciences, Engineering, Medicine
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| Subjects: | |
| Summary: |
"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." -- |
| Carrier Form: | xxv, 496 pages : illustrations (some color), color map ; 23 cm. |
| Bibliography: | Includes bibliographical references. |
| ISBN: |
9780309669603 030966960X |
| Index Number: | RC641 |
| CLC: | R556.6 |
| Call Number: | R556.6/A227 |
| Contents: |
Societal and structural contributors to disease impact -- Screening, registries, and surveillance -- Complications of sickle cell disease and current management approaches -- Health care organization and use -- Delivering high-quality sickle cell disease care with a prepared workforce -- Developing and delivering the next generation of therapies -- Community engagement and patient advocacy -- Strategic plan and blueprint for sickle cell disease action -- |