VU, Meharry team on sickle cell disease center of excellence
The Center will seek to bring high quality care to people with sickle cell disease (SCD) that is seamless and lifelong.
Michael DeBaun, M.D., MPH, an internationally renowned researcher in the area of SCD, has been named director of the new Center for Excellence. DeBaun, recently named vice chair for Clinical Affairs for the Vanderbilt Department of Pediatrics, arrives at Vanderbilt in November from Washington University in St. Louis.
DeBaun says he envisions teams of specialists from Vanderbilt and Meharry working shoulder to shoulder with community physicians to care for those with sickle cell disease. He also envisions family-centered care, and active involvement of the community within the Center.
“What attracted me to Vanderbilt was a willingness to embrace a model for care where individuals with sickle cell disease would have a permanent medical home across the life spectrum.
“The primary goal for the center is delivering the highest quality of care to improve the lives of infants, children and adults with sickle cell disease and their families,” DeBaun said.
Sickle cell disease is one of the most common genetic diseases in the United States, occurring in one in 400 births in African-Americans. The disease affects the red blood cells, causing the cells to become permanently deformed with an appearance of a sickle, interrupting the flow of blood in the smallest of blood vessels. Approximately 100,000 individuals in the United States have SCD and are at risk for chronic disease including heart, lung and strokes as a result of the disease.
DeBaun says care for individuals with sickle cell disease has historically been fragmented. Those with SCD have a difficult time coordinating between different specialists and their primary care provider, especially after childhood when many patients lose their primary care provider because they lose their health insurance.
“When a patient has a chronic health condition, we have to work harder to ensure they have a medical home, particularly when they become young adults,” DeBaun said.
Meharry and Vanderbilt currently provide many specialized services to people with sickle cell anemia; notably Vanderbilt's transition clinic for teens moving to adult care and Meharry's work as the primary testing center for the Middle Tennessee area.
Both academic medical centers provide ongoing clinical care as well as genetic testing and research in the area of Sickle Cell Disease.
“With a strong track record of experience and community engagement throughout his career, Dr. DeBaun provides us with another partner to more fully engage in battling the problem of sickle cell disease. We hope that through this new partnership with Vanderbilt and helping to strengthen the relationships with the community, we will be able to fully address the problem of sickle cell disease in Middle Tennessee,” Mouton said.
Debra L. Friedman, M.D., E. Bronson Ingram Chair in Pediatric Oncology and director of Pediatric Hematology-Oncology, says the Sickle Cell Center of Excellence will transform the care of patients with SCD in the region.
“The research projects Dr. DeBaun leads will bring clinical care of sickle cell disease to a new level, but one of the most exciting things about Dr. DeBaun is his passion for developing novel health care models for this population,” Friedman said.
When DeBaun arrives in November, he will bring with him the clinical coordinating center for the National Institutes of Health (NIH) Silent Cerebral Infarct Transfusion Trial.
A second NIH study provides collaboration nationally and internationally to develop the first longitudinal cohort of children with sickle cell anemia evaluated with repeated pulmonary function tests and sleep studies.