Sickle Cell Disease Newborn Screening Program


At a Glance

What: A collaborative quality improvement project to ensure appropriate screening and follow up for sickle cell disease and other blood disorders.

Why: Sickle cell disease is the most common genetic disorder detected through routine newborn screening efforts. With early detection, individuals can be educated about the disease and start on critical prophylactic medication and early treatment.

Who: Six teams comprised of federally qualified community health centers and other primary care sites, comprehensive sickle cell treatment centers and community-based organizations.

When: June 2011 to May 2015.

Funders: This project is supported by a cooperative agreement from HRSA.

Background

Sickle cell disease is an inherited genetic disorder that two parents who show no symptoms can pass onto a child. Early screening and educating families about the disorder helps promote relatively longer lives and quality of living for patients. (Read more on sickle cell disease here.)

Project Overview

NICHQ, along with the Sickle Cell Disease Association of America and the Boston Medical Center, serves as the National Coordinating and Evaluation Center for the program, with the goal of improving follow-up care for individuals who are detected to have sickle cell disease, sickle cell trait and other blood disorders. The National Coordinating and Evaluation Center assists regional newborn screening grantee network teams in quality improvement methods by coordinating, monitoring, and distributing data and best practices across the teams.

The teams include federally qualified community health centers and other primary care sites, comprehensive sickle cell treatment centers and community-based organizations based in Illinois, Massachusetts, New York, Ohio, Pennsylvania and Tennessee. In partnership with state newborn screening programs, these grantee network teams will also work to develop best practices in care coordination, medical home for adults and children, transition of care and provision of recommended care for those with sickle cell disease.

Goals and Activities

  • Improve the follow-up of individuals detected through newborn screening and other screening approaches with sickle cell disease, sickle cell trait, and other blood disorders
  • Assure that individuals identified with sickle cell disease and other blood disorders receive the highest quality of health care and supportive services throughout their lifespan
  • Assure that individuals with sickle cell disease, trait and other blood disorders — 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

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