| Description |
1 online resource (1 PDF file (xxv, 496 pages)) : illustrations. |
| Physical Medium |
polychrome |
| Description |
text file |
| Series |
Consensus study report
|
|
Consensus study report.
|
| Bibliography |
Includes bibliographical references. |
| 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. |
| Funding |
This activity was supported by Contract/Task Order No. HHSP233201400020B/HHSP23337086 between the National Academy of Sciences and the Office of the Assistant Secretary for Health, an operating agency of the U.S. Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organizations or agency that provided support for this project. |
| Contents |
Introduction -- 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 -- Appendixes. |
| Local Note |
eBooks on EBSCOhost EBSCO eBook Subscription Academic Collection - North America |
| Subject |
Sickle cell anemia.
|
|
Sickle cell anemia. |
|
United States. |
| Genre/Form |
Practice Guideline.
|
| Added Author |
Martinez, Rose Marie, 1956- editor.
|
|
Osei-Anto, Henrietta Awo, editor.
|
|
McCormick, Marie C., editor.
|
|
National Academies of Sciences, Engineering, and Medicine (U.S.). Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, issuing body.
|
| Other Form: |
Print version: 030966960X 9780309669603 (OCoLC)1228875773 |
| ISBN |
9780309669603 |
|
030966960X |
|
9780309669634 (electronic book) |
|
0309669634 (electronic book) |
|
9780309669610 (online) |
|
0309669618 |
|
