Parent with child in lap sitting across from doctor

Initiatives

Hemoglobinopathies National Coordinating Center (HNCC)

Sickle cell disease (SCD) is an inherited blood condition that affects an estimated 100,000 individuals each year, a disproportionate number of whom are Black and Hispanic American. 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 — notably people of color — encounter barriers to accessing evidence-based care, new medications and therapies, education, care coordination, and other supports.

NICHQ, with partner organization Abt Associates, is supporting a Hemoglobinopathies National Coordinating Center (NCC) to help SCD treatment demonstration program grantees — including community and federally qualified health centers—address structural and systemic barriers in their regions and implement evidence-based SCD care. The NICHQ and Abt Associates team are collaborating with organizations such as the Sickle Cell Disease Association of America to improve the quality of–and access to–care for SCD.

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Status: Active

September 2021 to September 2026

  • Who: NICHQ and Abt Associates
  • Funder: Health Resources & Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB)
  • Our Role: Building off our work in sickle cell disease collaboratives over the past decade, NICHQ will be providing technical assistance and supporting data collection to compile information about programs, services, and recommendations from the work of five Sickle Cell Demonstration Programs that cover 53 states and U.S. territories, twenty Newborn Screening Follow Up Programs, and five community health centers. NICHQ will be taking a systemic approach to ensure providers have access to education, evidence-based treatments are utilized, and high-quality care is comprehensive, coordinated, and continues through the lifespan.
  • Other Information: NICHQ served as the National Coordinating Center for HRSA’s Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program from 2017-2021 and will bring that expertise to this partnership. More than 100 health systems, clinics, and community-based organizations participated in the previous iteration of the collaborative, leading to more than 25,000 people with SCD being cared for by engaged healthcare providers.