2021 Report to Congress: Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program

Page 1

SICKLE CELL DISEASE TREATMENT DEMONSTRATION REGIONAL COLLABORATIVES PROGRAM

Report to Congress SEPTEMBER 2021

National Institute for Children’s Health Quality

Funding Disclaimer: The 2017-2021 Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program was funded under grant number HHSH 250201800032P and administered by the Health Resources and Services Administration and Child Health Bureau, Division for Children with Special Health Care Needs, of the U.S. Department of Health and Human Services. The National Institute for Children’s Health Quality (NICHQ) served as the National Coordinating Center.

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Articles inside

Strategies to Increase Delivery of Hydroxyurea, Transcranial Doppler, and Immunizations

9min
pages 289-293

Increasing Provider Knowledge Through Education

3min
pages 294-296

Strategies and Resources to Increase Access to Quality Care

9min
pages 284-288

Data and Measurement Methods

20min
pages 264-273

Section 7 | National Academies for Sciences, Engineering, and Medicine (NASEM): A Blueprint for Action

3min
page 93

Section 6 | High-Quality Care

17min
pages 86-92

Section 5 | Provider Support Strategies

10min
pages 82-85

Section 4 | History of Federal Activities Supporting Sickle Cell Disease

2min
page 81

Section 3 | National Heart, Lung, and Blood Institute Recommendations and Guidelines

5min
pages 79-80

Section 2 | SCD Evidence-Based Care: Therapies, Disease Prevention, Screening, Pain Management

13min
pages 75-78

Midwest Regional Collaborative

12min
pages 56-60

Northeast Regional Collaborative

5min
pages 70-73

Heartland/Southwest Regional Collaborative

9min
pages 61-64

Southeast Regional Collaborative

10min
pages 65-69

Section 1 | Incidence and Prevalence

2min
page 74

Pacific Regional Collaborative

9min
pages 52-55

General Recommendations to Support Improved Care for Individuals with SCD

12min
pages 45-50

Recommendations Emerging From Program Work

11min
pages 41-44

Healthcare Domain 2

7min
pages 26-28

Healthcare Domain 3

14min
pages 29-33

Lessons Learned and Recommendations

2min
page 34

Impact of the COVID-19 Pandemic on the Program

5min
pages 35-36

Data Methodology

3min
page 20

Healthcare Domain 1

10min
pages 21-25
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