HIGHLIGHTS
- Sickle cell disease (SCD) is an inherited blood condition that affects an estimated 100,000 individuals in the United States, with Black and Hispanic people bearing the greatest burden of disease.
- Abt helps HRSA strengthen the quality of SCD care across the lifespan, from newborn screening to treatment.
- Through the Hemoglobinopathies National Coordinating Center (HNCC), Abt strengthens the system of care, improves education for patients, families, and clinicians, facilitates partnerships and linkages to clinical and community supports.
PROJECT
Hemoglobinopathies National Coordinating Center
The Challenge
Sickle cell disease (SCD) is an inherited blood condition that affects an estimated 100,000 individuals in the United States, a disproportionate number of whom are Black and Hispanic Americans. While newborn screening for SCD occurs in every state, there are still barriers to accessing comprehensive, high-quality care throughout a person’s lifespan, and many individuals with SCD encounter barriers to accessing evidence-based care, new medications and therapies, and other supports. The Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB), contracted with Abt Global and partner the National Institute for Children’s Health Quality (NICHQ) to strengthen the SCD system of care and support by managing its Hemoglobinopathies National Coordinating Center (HNCC). The HNCC’s objectives are to build a foundation based on local and regional partnerships through regional action plans—and focus on the implementation of successful strategies such as assembling comprehensive SCD care teams, supporting access to disease modifying therapies, and hub-and-spoke models in which specialty sickle cell centers provide support in the co-management of care with more local healthcare providers for SCD patients.
The Approach
Through the HNCC, Abt and NICHQ provide technical assistance (TA) and share learning opportunities to 30 awardees in HRSA’s MCHB SCD programs, which include clinicians in treatment demonstration programs and newborn screening follow-up programs, and with community-based organizations to strengthen regional partnerships and the SCD system of care. We foster collaboration between clinicians, community organizations, and other partners to improve the ability to deliver coordinated, comprehensive care across the lifespan for all individuals with SCD. Our TA offerings range from providing specialized training in SCD for community health workers, to supporting regional action plan development, to monitoring data collection development, to leading quality improvement efforts.
The Results
The team improves SCD systems of care in five regions—Northeast, Southeast, Midwest, Heartland/Southwest, and Pacific—and outcomes for individuals living with SCD and their families.
Experts:
Laura Thornton
Senior Associate
Link to bio
Kelly Wagner
Senior Director
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Daniella Chambers
Senior Analyst
Megan Noel
Associate
Jeffrey Knudsen
Senior Associate
Martina Coe
Associate