Home » Texas Children’s Sickle Cell Center joins NIH Clinical Research Network SCDCRN
May 22, 2009 – Texas Children’s Hospital
Texas Children’s Hospital has one of the country’s largest pediatric sickle cell centers, seeing more than 1,000 patients each year. A new affiliation with the Sickle Cell Disease Clinical Research Network, a research group funded by the National Institutes of Health, will provide Texas Children’s patients with the opportunity to participate in innovative research protocols. The center expects to begin enrolling patients in the new studies associated with the network later this year.
“We are already very active in research so we’re excited to be able to offer even more studies to our patients,” said Dr. Brigitta Mueller, director of Texas Children’s Sickle Cell Center. “There is still so much we don’t know about sickle cell disease, yet it is one of the most common inherited diseases in the world.”
Two of the center’s current and most important clinical trials are Stroke with Transfusions Changing to Hydroxyurea (SWITCH) and Silent Infarct with Transfusion (SIT). Both studies focus on one of the most debilitating and common side effects of sickle cell disease—stroke. After a stroke, sickle cell patients are generally given a blood transfusion every three to five weeks to prevent additional strokes. Sometimes sickle cell patients have a series of mini-strokes with no visible physical side effects and the problem is only detected by performing a brain MRI.
“With SIT, we’re attempting to discover whether receiving blood transfusions helps prevent additional strokes. Sometimes sickle cell patients have a series of mini-strokes with no visible physical side effects and the problem is only detected by performing a brain MRI.
“With SIT, we’re attempting to discover whether receiving blood transfusions helps prevent additional strokes in these patients and whether it justifies the risks associated with chronic blood transfusions,” said Mueller.
The Sickle Cell Center has screened about 70 patients for the SIT study and 10 of them have been assigned either to be observed or to receive transfusions.
SWITCH is studying whether patients would benefit from switching to the medication hydroxyurea, which can treat iron overload—a persistent problem for patients who receive repeated blood transfusions. Texas Children’s currently has 6 patients enrolled in SWITCH.
Until research yields a better understanding of sickle cell disease, regular check-ups remain a critical component of limiting complications from the disease. However, during though economic times families sometimes make the difficult choice to skip routine care for their child with sickle cell disease.
“It’s a major concern for us when children miss their appointments,” said Mueller. “Patients with sickle cell disease live so much longer now because preventive care helps doctors identify problems earlier.”
Children with sickle cell disease should get a check-up every three months until they are two years old; check-ups are recommended every six months for children between the ages of three and 18.
In some cases, the patient’s doctor may recommend more frequent visits.
Pictured: Five-year old Feyisayo Ogunmokun colors with crayons while having a blood transfusion for sickle cell disease.