Addressing Sickle Cell Disease

Name: Addressing Sickle Cell Disease | A Strategic Plan and Blueprint for Action
Brand: National Academies Press
Price: 168.99 EUR
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A Strategic Plan and Blueprint for Action

National Academies of Sciences Engineering and Medicine Health and Medicine Division Board on Po(Autor*in)

Rose Marie Martinez Henrietta Awo Osei-Anto Marie McCormick(Herausgeber*in)

National Academies Press

1. Auflage

Erschienen am 22. Dezember 2020

522 Seiten

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978-0-309-66963-4 (ISBN)

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Inhalt

Intro
TITLE PAGE
COPYRIGHT PAGE
TABLE OF CONTENTS
ACRONYMS AND ABBREVIATIONS
SUMMARY
1 INTRODUCTION
Scope of Work
Study Process and Information Gathering
Overview of SCD and SCT
The Sickle Cell Patient and the Health Care System
Policy Making and Funding for SCD
Key SCD Actors
Organization of the Report
References
2 SOCIETAL AND STRUCTURAL CONTRIBUTORS TO DISEASE IMPACT
Introduction
Societal Factors
Individual Factors
Environmental Factors
The Burden of SCD
Conclusions and Recommendations
References
3 SCREENING, REGISTRIES, AND SURVEILLANCE
Screening for SCD and SCT
Communicating Screening Results
The Use of Screening Data
Patient Registries
Public Health Surveillance
Ethical Implications and Privacy Considerations
Conclusions and Recommendations
References
4 COMPLICATIONS OF SICKLE CELL DISEASE AND CURRENT MANAGEMENT APPROACHES
Introduction
Pain in SCD
Overview of SCD Complications
Management of SCD
SCT
Conclusions and Recommendations
References
5 HEALTH CARE ORGANIZATION AND USE
Introduction
Health Care for Children with SCD
Transition from Pediatric to Adult Care
Health Care for Adults with SCD
Comprehensive SCD Care Delivery Model
Barriers to Comprehensive Care
Services for SCT
Conclusions and Recommendations
References
6 DELIVERING HIGH-QUALITY SICKLE CELL DISEASE CARE WITH A PREPARED WORKFORCE
Guidelines for High-Quality SCD Care
Patient-Centered Dimensions of High-Quality Care
Promoting Uptake of Recommendations for SCD Care
Quality Indicators for SCT and Genetic Counseling for SCD and SCT
Summary
The Availability of a Trained and Prepared Workforce
Training the Next Generation of SCD Care Providers
Conclusions and Recommendations
References
7 DEVELOPING AND DELIVERING THE NEXT GENERATION OF THERAPIES
Patient Perspectives
Therapies Under Development
Clinical Trials and the Drug Approval Process
Health Care Delivery Policy
Reimbursement Policy
Conclusions and Recommendations
References
8 COMMUNITY ENGAGEMENT AND PATIENT ADVOCACY
Historical Perspective
Sickle Cell Community-Based Organizations and Patient Advocacy Groups
Challenges Faced by Sickle Cell Advocates and Groups
Models of Patient Advocacy from Other Rare Diseases
Opportunities to Move from Local to System-Level Change
Summary
Conclusions and Recommendations
References
9 STRATEGIC PLAN AND BLUEPRINT FOR SICKLE CELL DISEASE ACTION
References
APPENDIXES
A Public Meeting Agendas and Submissions to the Committee
B Literature Search Terms and Strategy
C Committee and Staff Biographies
D Newborn Screening Results Reporting Protocols for Sickle Cell Disease and Sickle Cell Trait
E Sickle Cell Data Collection Program
F Georgia Comprehensive Sickle Cell Center: A Case Study
G Emory Adult Cystic Fibrosis Program
H Health Resources and Services Administration Sickle Cell Disease Programs
I Select Treatments Currently Under Development for Sickle Cell Disease
J Other Training Models for Hematologists
K Sickle Cell Community-Based Organizations and Patient Groups in the United States
L Summary Table of Strategic Plan and Blueprint for Sickle Cell Disease Action
M Summary Table of Sickle Cell Trait Discussion in Report
N Glossary

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