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National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action; Martinez RM, Osei-Anto HA, McCormick M, editors. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington (DC): National Academies Press (US); 2020 Sep 10.

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Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.

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Appendix BLiterature Search Terms and Strategy

Search No.Search Terms
Sickle Cell Disease OR Sickle Cell Trait.mp [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, unique identifier]
AND
Introduction# found: 9,588
1*Legislation OR Law
2*Epidemiology
3*Prevalence
4*Incidence
5*Health Outcomes OR Outcome Measures
6*Risk Factors
7*Complications (stroke, ACS, pain crises, kidney and heart issues, etc.)
8*Thalassemia
9*Heredity
10*Anemia
11*Hemoglobinopathy
12*Gene
13*Pain Crisis/Vaso-Occlusive Crises
14*Hemoglobin S
15*Homozygosity
16*Red Blood Cells
17Morbidity
18Mortality
19Pathophysiology
20Global Burden
Structural Determinants# found: 1,373
21*Economic Burden OR Unmet Need OR Burden of Health OR Burden of Illness
22*Health Disparities
23*Cost
24*Cost of Care
25*Financial Impact OR Economic Hardship OR Poverty
26*Life Course OR Life Course Perspective OR
Life course
27*Education
28*Employment
29Bias (search before 1990)
30Health Literacy
31Stigma (search before 1990)
32Discrimination (search before 1990)
33Racism (search before 1990)
Screening Surveillance# found: 1,405
34*Federal Programs OR State Programs OR Local Programs
35*Surveillance
36*Registries
37*Screening OR Prevention
38*Screening (newborn, etc.)
39*Limitations
40*Bioethics
41*Ethics
42*Medical Ethics
43*Genetic Counseling
44*Reproductive Counseling
Health Care Organization and Delivery# found: 2,428
45*Healthcare Barriers
46*Access to Care
47*Care Delivery
48**Insurance
49**Medicaid
50**Medicare
51**Commercial insurance
52**Commercial Payers
53**Payers
54**Payment policy
55*Disease Management
56*Care Management
57*Pain Management
58*Psychosocial Effects
59Geographical Barriers
60Emergency Care OR Emergency Department
61Mental Health
62Behavioral Health
63Cognitive Deficit OR Cognitive Impairment
64Transcranial Doppler
65Federally Qualified Healthcare Centers
Quality of Care# found: 715
66*“Best Practices for Care”
67*Pediatric Care
68*Adult Care
69*Quality of Life
70**Patient-centered
71**Clinical guidelines
72**Primary care providers
73**Clinical guidelines
74*Patient Engagement OR Family Engagement
Workforce Issues# found: 1,091
75*Workforce Development OR Workforce Needs
76*Community Health Workers
77*Employment
78**Advanced practice nurse
79**Advanced practiced provider
80**Nursing OR Nurses OR Nurse Practitioners
81**Family physicians
82Hospitalists
83Benign Hematology
84Training (Medical students OR Residents)
Internal Medicine
Social Workers
Psychologists
Advocacy and Community Engagement# found: 569
85*Patient Advocacy
86*Community Engagement
87*Funding
88*Research
89*Patient Education OR Family Education
90*Social Support
91Policy
Current and Innovative Therapeutic Approaches and the Search for a Cure# found: 5,611
92*Treatment
93*Non-pharmacological Therapies
94*Skill-based Therapies
95*Educational OR Psychological Therapies
96*Gene editing OR Gene Replacement
97*Stem Cell Therapy OR Hematopoietic Stem Cells
98*Hydroxyurea
99*Endari/L-glutamine
100*Epigenetics
101Clinical Trials
NASEM/IOM Studies# found: 6
102NIH COPD Action Plan
103NASEM: Rare Diseases and Orphan Products: Accelerating Research and Development Report
104NASEM: Communities in Action: Pathways to Health Equity Report
105NASEM: Epilepsy Across the Spectrum: Promoting Health and Understanding Report
106NASEM: A National Strategy for the Elimination of Hepatitis B and C: Phase Two Report
107NASEM: Unequal Treatment Report
Copyright 2020 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK566452

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