NICHQ to Lead National Sickle Cell Disease Prevention and Treatment Demonstration Program
Receives $3.5 Million HRSA Grant to Improve Care and Outcomes for Individuals with Sickle Cell Disease (SCD) in Concert with the Sickle Cell Disease Association of America (SCDAA) and the Boston Medical Center (BMC)
Against the backdrop of the 100 year anniversary of the discovery of the sickle cell, the National Initiative for Children’s Healthcare Quality (NICHQ) today announced it has been awarded a $3.5 million grant from the Department of Health and Human Services/Health Resources and Services Administration (HRSA) to improve care and outcomes for individuals with Sickle Cell Disease (SCD). NICHQ will form a unique consortium with the Sickle Cell Disease Association of America (SCDAA) and the Boston Medical Center (BMC) to serve as the National Coordinating Center (NCC) that will organize and oversee demonstration and educational programs designed to establish effective mechanisms for the prevention and treatment of this debilitating disease.
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.
In this context, Congress created the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) under HRSA in the American Jobs Creation Act of 2004. This program seeks to improve care and outcomes for persons with sickle cell disease by providing grants to regional Networks consisting of primary care sites (Federally Qualified Health Centers and others) working with comprehensive sickle cell centers and community based organizations. The National Coordinating Center (NCC) was created to coordinate these Networks; collect, monitor and distribute best practice data and findings; identify a protocol for the treatment of SCD; and develop and disseminate educational materials.
The focal point of the NCC under the direction of NICHQ and its partners will be a Hemoglobinopathy Learning Collaborative in which participating teams from Network sites will learn from each other and from national expert faculty to make meaningful improvements in care and report regularly on their activities and results. The NCC will spearhead the creation of a standard set of key recommendations for care and core measures to track performance. It will also create a clinical registry system that will support the efforts of the Network sites and supply critical data collection and reporting.
NICHQ will provide overall leadership for the project. In coordination with NICHQ, SCDAA will manage all meetings and BMC will provide critical content expertise and support in medical informatics. Together, these three organizations form a strong consortium with proven expertise. The experts drawn from these organizations who will serve as core faculty for this program are:
Charles Homer, MD, President and CEO, NICHQ
Jason Wang, MD, PhD, Assistant Professor of Pediatrics and Public Health, BMC
Lanetta Jordan, MD, MPH, MSPH, Chief Medical Officer, SCDAA
Philippa Sprinz, MD, Chief of Pediatric Hematology, BMC
William Adams, MD, Director of Child Health Informatics, BMC
“NICHQ is thrilled to have the opportunity to help improve care for people with SCD, and we’re honored to be engaged in this work with two exceptional partners – the Boston Medical Center and the Sickle Cell Disease Association of America, “said Charles Homer, MD, NICHQ’s President and CEO. “Now 100 years since the discovery of the sickle cell, this disease remains a critical problem in our society. We are excited to apply our improvement expertise to help make important advances in treatment and outcomes.”
“This project will provide vital support to improve quality of care and outcomes for sickle cell patients across the country,” said Lanetta Jordan, MD. MPH, MSPH, Chief Medical Officer at SCDAA and adult faculty chair for this initiative. “In bringing together a diverse community of learners to gather and share best practices, this action-oriented effort can make a real difference in the lives of the thousands of people living with the disease.”
“At BMC, we are deeply committed to ensuring high quality care for children with SCD, as we serve predominantly an urban African American population and many of our families are impacted by this disease,” said Jason Wang, MD, PhD, Assistant Professor of Pediatrics and Public Health, Boston Medical Center. “We hope that through our collaboration with NICHQ and SCDAA, we can contribute to the improvement in quality of care for all people with SCD.”
Read the announcement from HRSA.
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 www.nichq.org.
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 www.sicklecelldisease.org.
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 www.bmc.org.