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NICHQ to Lead National Sickle Cell Disease Newborn Screening Program

September 2011

Receives HRSA Grant to Improve Follow-Up Care of Newborns with Sickle Cell Disease (SCD) in Concert with the Sickle Cell Disease Association of America (SCDAA) and the Boston Medical Center (BMC)

September is Sickle Cell Awareness Month, an exciting time for the National Initiative for Children’s Healthcare Quality (NICHQ) to announce a new project that seeks to improve newborn screening and follow up for the disease. The Newborn Screening Program (NBSP) fills out NICHQ’s Sickle Cell portfolio and means that NICHQ’s quality improvement focus will be directed across the entire lifespan of those who suffer with the blood disorder.

The Newborn Screening Program will operate alongside NICHQ’s Sickle Cell Disease Treatment Demonstration Program (SCDTDP), also funded through the federal Health Resources and Services Administration (HRSA). NICHQ works in a unique consortium with the Sickle Cell Disease Association of America (SCDAA) and the Boston Medical Center (BMC) on both projects.

The goals of the Newborn Screening Program are to:

1. Improve the follow-up of individuals detected through newborn screening with sickle cell disease (SCD), sickle cell trait, and other hemoglobinopathies;
2. Assure that individuals identified with SCD and other hemoglobinopathies receive the highest quality of health care and supportive services throughout their lifespan; and
3. Assure that individuals with SCD, trait and other hemoglobinopathies—including those in “emerging populations”—receive appropriate education and counseling to enable them to make informed health-related decisions, including, but not limited to, those related to reproductive choices.

The program will accomplish these goals by establishing local and regional NBSP Networks, which will include Federally Qualified Community Health Centers and other primary care sites working with comprehensive sickle cell treatment centers and local community-based organizations. In partnership with state newborn screening systems, these Networks will work with HRSA Regional Genetic and Newborn Screen Service Collaboratives and other partners to improve access to and quality of newborn screening services.

It is estimated that one in every 400-500 African American children born in the United States have SCD and approximately 70,000-100,000 people live with the disease in this country. Although medical advances have extended life expectancy from 14 years in the mid-1970s to over 40 years in the mid-1990s, people with SCD suffer significant morbidities such as pain episodes, acute chest syndrome, and stroke, and significant geographic disparities in outcomes remain.

“We at NICHQ are thrilled to be serving as the National Coordinating and Evaluation Center for HRSA’s Sickle Cell Disease Newborn Screening Program,” said Charlie Homer, NICHQ’s president and CEO. “This is a tremendous opportunity to improve quality of care and outcomes for a population that has great needs and can truly benefit from a systematic, community based approach to improvement. Plus, by bringing together our work on HRSA’s two sickle cell programs, we can expand our reach and impact in a cost effective manner as well. We are grateful to HRSA for their confidence in our approach.”

Founded in 1999, the National Initiative for Children’s Healthcare Quality (NICHQ) is an action-oriented organization dedicated to achieving a world in which all children receive the healthcare they need. Led by experienced pediatric healthcare professionals, NICHQ’s mission is to improve children’s health by improving the systems responsible for the delivery of children’s healthcare. For more information, visit

Founded in 1971, The Sickle Cell Disease Association of America is the premier national consumer and education organization for individuals with SCD. With member organizations in 27 states, SCDAA coordinates national community building, advocacy, research and educational projects for consumers, medical professionals and researchers. For more information, visit

About BMC
Boston Medical Center is a non-profit, 369-bed hospital located in Boston, MA. BMC provides a comprehensive range of inpatient, clinical and diagnostic services in more than 70 areas of medical specialties and subspecialties, including cardiac care and surgery, hypertension, neurological care, orthopedics, geriatrics and Women’s health. For more information, visit

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