The Heartland Southwest Sickle Cell Disease (SCD) Network is funded by a grant from Health Resources and Services Administration (HRSA) for the purpose of improving care and quality of life of people with sickle cell disease in the eight-state region that includes Arkansas, Iowa, Kansas, Louisiana, Missouri, Nebraska, Oklahoma and Texas. The Heartland Southwest SCD Network is currently one of five HRSA-funded regions in the United States.
The purpose of the HRSA grant is to support the development and establishment of systemic mechanisms to improve the prevention and treatment of sickle cell disease and its complications, including:
- Coordination of service delivery for individuals with sickle cell disease
- Genetic counseling and testing
- Bundling of technical services related to the prevention and treatment of sickle cell disease
- Training of health professionals
- Expansion and coordination of education, treatment and continuity of care for individuals with sickle cell disease
Each awardee will take the lead for establishing a collaborative within its region, will serve as sickle cell disease technical assistance center in the region and will collect and maintain sickle cell disease data for the region.
Recognizing the challenge in providing care to a population that is typically minorities who are financially challenged with a chronic disease, hematologists and public health scholars from Washington University School of Medicine have chosen to forge relationships across the Heartland Southwest SCD Network region (Arkansas, Iowa, Kansas, Louisiana, Missouri, Nebraska, Oklahoma and Texas) to improve the quality of care provided to people with SCD in our region and beyond. Community-based organizations (Sickle Cell Association and the Youth and Family Center) and a HRSA designated Health Center Controlled Network (the Integrated Health Network) will focus on the consumer perspective and educating safety net providers in St. Louis, the largest metropolitan area and concentration of patients with SCD in the Heartland Southwest SCD Network region. This new collaborative will provide education, dissemination of standards of care, quality improvement efforts and data collection for a collective impact on the number of providers who are educated about the care of people with SCD, particularly about disease modifying therapies.
Sickle Cell Association: http://sicklecellassociation.org/
Youth and Family Center: http://www.theyfc.org/
King, Allison, MD, PhD, assistant professor of occupational therapy, pediatrics, surgery (prevention and control) and education is director of the Heartland Southwest SCD Network. Dr. King is a pediatric hematologist and oncologist with formal training in clinical investigation and research methods in public health and education. The focus of her research is to determine factors related to the daily function of children with chronic diseases with a particular emphasis on disparities and family function. Specifically, she studies the cognitive, educational, and functional outcomes of children with sickle cell disease and children with brain tumors. Her clinical research laboratory has been addressing the factors related to poor educational outcomes in these populations, and they are working towards developing interventions to improve the children’s function and quality of life. In addition, Dr. King is also involved in improving access to quality healthcare for patients of all ages with sickle cell disease. Her office and laboratory are located in the Program in Occupational Therapy, within the 4444 Forest Park building on Washington University School of Medicine's campus.
Program in Occupational Therapy
Washington University School of Medicine in St. Louis
Campus Box 8505, 4444 Forest Park Avenue
St. Louis, MO 63108-2212