Addressing 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. Some adul...
Gespeichert in:
| Weitere Verfasser: | , , |
|---|---|
| Format: | Elektronisch E-Book |
| Sprache: | English |
| Veröffentlicht: |
Washington, DC :
National Academies Press,
[2020]
|
| Schriftenreihe: | Consensus study report.
|
| Schlagworte: | |
| Online-Zugang: | Volltext |
| Zusammenfassung: | 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. |
| Beschreibung: | 1 online resource (1 PDF file (xxv, 496 pages)) : illustrations. |
| Bibliographie: | Includes bibliographical references. |
| ISBN: | 9780309669634 0309669634 9780309669610 0309669618 |
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| 245 | 0 | 0 | |a Addressing sickle cell disease : |b a strategic plan and blueprint for action / |c Marie McCormick, Henrietta Awo Osei-Anto, Rose Marie Martinez, editors ; Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, Board on Population Health and Public Health Practice, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine. |
| 264 | 1 | |a Washington, DC : |b National Academies Press, |c [2020] | |
| 300 | |a 1 online resource (1 PDF file (xxv, 496 pages)) : |b illustrations. | ||
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| 520 | 3 | |a 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. | |
| 536 | |a 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. | ||
| 588 | |a Description based on online resource; title from PDF title page (viewed September 1, 2021). | ||
| 505 | 0 | |a 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. | |
| 650 | 0 | |a Sickle cell anemia. |0 http://id.loc.gov/authorities/subjects/sh85122294 | |
| 650 | 1 | 2 | |a Anemia, Sickle Cell |0 https://id.nlm.nih.gov/mesh/D000755 |
| 651 | 2 | |a United States |0 https://id.nlm.nih.gov/mesh/D014481 | |
| 650 | 6 | |a Drépanocytose. | |
| 650 | 7 | |a Sickle cell anemia |2 fast | |
| 655 | 2 | |a Practice Guideline |0 https://id.nlm.nih.gov/mesh/D017065 | |
| 700 | 1 | |a Martinez, Rose Marie, |d 1956- |e editor. |0 http://id.loc.gov/authorities/names/no2013121617 | |
| 700 | 1 | |a Osei-Anto, Henrietta Awo, |e editor. | |
| 700 | 1 | |a McCormick, Marie C., |e editor. | |
| 710 | 2 | |a National Academies of Sciences, Engineering, and Medicine (U.S.). |b Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, |e issuing body. |0 http://id.loc.gov/authorities/names/n2021182841 | |
| 758 | |i has work: |a Addressing sickle cell disease (Text) |1 https://id.oclc.org/worldcat/entity/E39PCGQcVvC8x3DcRxmVggBqXq |4 https://id.oclc.org/worldcat/ontology/hasWork | ||
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| author_facet | Martinez, Rose Marie, 1956- Osei-Anto, Henrietta Awo McCormick, Marie C. |
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| 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. |
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| id | ZDB-4-EBA-on1235870069 |
| illustrated | Illustrated |
| indexdate | 2024-10-25T15:51:00Z |
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| isbn | 9780309669634 0309669634 9780309669610 0309669618 |
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| spelling | Addressing sickle cell disease : a strategic plan and blueprint for action / Marie McCormick, Henrietta Awo Osei-Anto, Rose Marie Martinez, editors ; Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, Board on Population Health and Public Health Practice, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine. Washington, DC : National Academies Press, [2020] 1 online resource (1 PDF file (xxv, 496 pages)) : illustrations. text txt rdacontent computer c rdamedia online resource cr rdacarrier Consensus study report Includes bibliographical references. 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. 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. Description based on online resource; title from PDF title page (viewed September 1, 2021). 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. Sickle cell anemia. http://id.loc.gov/authorities/subjects/sh85122294 Anemia, Sickle Cell https://id.nlm.nih.gov/mesh/D000755 United States https://id.nlm.nih.gov/mesh/D014481 Drépanocytose. Sickle cell anemia fast Practice Guideline https://id.nlm.nih.gov/mesh/D017065 Martinez, Rose Marie, 1956- editor. http://id.loc.gov/authorities/names/no2013121617 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. http://id.loc.gov/authorities/names/n2021182841 has work: Addressing sickle cell disease (Text) https://id.oclc.org/worldcat/entity/E39PCGQcVvC8x3DcRxmVggBqXq https://id.oclc.org/worldcat/ontology/hasWork Print version: 030966960X 9780309669603 (OCoLC)1228875773 Consensus study report. http://id.loc.gov/authorities/names/n2017188206 FWS01 ZDB-4-EBA FWS_PDA_EBA https://search.ebscohost.com/login.aspx?direct=true&scope=site&db=nlebk&AN=2742044 Volltext CBO01 ZDB-4-EBA FWS_PDA_EBA https://search.ebscohost.com/login.aspx?direct=true&scope=site&db=nlebk&AN=2742044 Volltext |
| spellingShingle | Addressing sickle cell disease : a strategic plan and blueprint for action / Consensus study report. 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. Sickle cell anemia. http://id.loc.gov/authorities/subjects/sh85122294 Anemia, Sickle Cell https://id.nlm.nih.gov/mesh/D000755 Drépanocytose. Sickle cell anemia fast |
| subject_GND | http://id.loc.gov/authorities/subjects/sh85122294 https://id.nlm.nih.gov/mesh/D000755 https://id.nlm.nih.gov/mesh/D014481 https://id.nlm.nih.gov/mesh/D017065 |
| title | Addressing sickle cell disease : a strategic plan and blueprint for action / |
| title_auth | Addressing sickle cell disease : a strategic plan and blueprint for action / |
| title_exact_search | Addressing sickle cell disease : a strategic plan and blueprint for action / |
| title_full | Addressing sickle cell disease : a strategic plan and blueprint for action / Marie McCormick, Henrietta Awo Osei-Anto, Rose Marie Martinez, editors ; Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, Board on Population Health and Public Health Practice, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine. |
| title_fullStr | Addressing sickle cell disease : a strategic plan and blueprint for action / Marie McCormick, Henrietta Awo Osei-Anto, Rose Marie Martinez, editors ; Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, Board on Population Health and Public Health Practice, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine. |
| title_full_unstemmed | Addressing sickle cell disease : a strategic plan and blueprint for action / Marie McCormick, Henrietta Awo Osei-Anto, Rose Marie Martinez, editors ; Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, Board on Population Health and Public Health Practice, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine. |
| title_short | Addressing sickle cell disease : |
| title_sort | addressing sickle cell disease a strategic plan and blueprint for action |
| title_sub | a strategic plan and blueprint for action / |
| topic | Sickle cell anemia. http://id.loc.gov/authorities/subjects/sh85122294 Anemia, Sickle Cell https://id.nlm.nih.gov/mesh/D000755 Drépanocytose. Sickle cell anemia fast |
| topic_facet | Sickle cell anemia. Anemia, Sickle Cell United States Drépanocytose. Sickle cell anemia Practice Guideline |
| url | https://search.ebscohost.com/login.aspx?direct=true&scope=site&db=nlebk&AN=2742044 |
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