Sickle Cell Program
Texas Children's Sickle Cell Center is one of the largest programs in the country, serving over 1,000 active patients every year. The Sickle Cell Center participates in new research studies and clinical trials to offer access to groundbreaking new drug therapies for sickle cell disease and SCD complications.
One of the largest programs in the country, Texas Children's Sickle Cell Center is associated with Baylor College of Medicine, one of the top medical schools in the country, and Texas Children's Hospital, the largest pediatric hospital in the United States. It is a part of the Texas Children's Hematology Center.
Texas Children's Sickle Cell Center provides treatment for all aspects of sickle cell disease, offering patient care, education, screening and counseling for afflicted patients and their families. The program is one of the largest in the country, serves over 1,000 active patients every year, and is participating in new research studies through the Sickle Cell Disease Research Network.
The Sickle Cell Center offers access to new drug therapies for sickle cell disease and its complications. The staff works closely with the neuropsychology, neuro-radiology, cardiology and pulmonary departments in order to better understand the pathophysiology and to develop treatment options.
Once almost exclusively a pediatric illness, research has resulted in early detection and improvements in treatment that have extended life expectancy from the 20s to the mid-40s for many patients. Through its affiliation with Baylor College of Medicine, the center helps older patients make the important transition from pediatric to adult sickle cell care. Texas Children's Sickle Cell Center is housed within the world-renowned Texas Children's Cancer Hematology Center.
Texas Children's Sickle Cell Center utilizes a multidisciplinary team approach including nurse practitioners, physicians, a child life specialist, a social worker, a psychologist, genetic counselor, and a neuropsychologist. The center provides comprehensive, family-centered care for children with sickle cell disease, commonly known as sickle cell anemia.
A dedicated sickle cell care team is responsible for the care of all sickle cell patients. This team consists of 3 physicians, three nurse practitioners, clinic nurses, a research associate, data manager, social worker and clinical pharmacist, all with specific expertise in the management of children with sickle cell disease. This multidisciplinary approach allows the center to provide comprehensive, family-centered care for children with sickle cell disease, commonly known as sickle cell anemia.
Formal sickle cell clinic is held three days per week but sickle cell team members can also see patients on other days of the week. The clinic sees 20-30 patients with sickle cell disease on dedicated clinic days and 10-12 patients on the other days. Twice a month, a combined pulmonary/sickle cell clinic is held for sickle cell patients with reactive airway disease, sleep apneas or repeated episodes of acute chest syndrome.
Facilities
The Outpatient Clinic
The Center is located at the Texas Children’s Cancer Hematology Center. The outpatient clinic occupies the 14th floor of the Clinical Care Center at Texas Children's Hospital and is comprised of over 28,000 square feet of space with 12 exam rooms, 4 procedure rooms, 12 day hospital rooms and a large infusion suite divided into areas for toddlers, young children and adolescents, respectively. A specific physical area, including a 4-exam room pod is designated as the sickle cell clinic.
A SHARE Desk, which is a centralized location where families can obtain information or access resources, is located centrally within the registration area. The SHARE Program is designed to help patients and their families access resources and obtain information and education on services that are available at the Texas Children's Sickle Cell Center and throughout the community.
The clinic has a fully equipped, CLIA certified clinical hematology laboratory, patient-parent educational suite (with appropriate computer access), and offices for the sickle cell social worker, psychologist and neuro-psychologist and child life specialists. A complete satellite pharmacy, staffed by certified Pharmacists and a technician, is located in the clinic area. An electronic medical record that has been in use in the center for over ten years is used for charting. Learn More
The Emergency Room
For emergencies during non-clinic hours, sickle cell patients may be seen in the Emergency Department at Texas Children’s Hospital, which is open 24 hours a day, 7 days a week. In 2007, over 800 patient visits occurred due to problems related to sickle cell disease.
The Inpatient Unit
Patients requiring hospitalization are admitted to the hematology/oncology unit, a 36-bed inpatient ward on the 9th floor of the West Tower building. Patients requiring ambulatory follow-up are subsequently seen in the outpatient clinic. Patients with pain crises can also be treated in the Day Hospital, a section of the outpatient clinic staffed with a physician and a nurse dedicated to the triage of patients and their treatment. Learn More
The Pheresis Center
Over eighty patients are treated on a chronic transfusion regimen, receiving their monthly transfusions either in the Sickle Cell Center outpatient clinic or at the pheresis center. The pheresis center is under the leadership of the Director of the Dialysis Unit and overseen by an Advisory Board, the Bone Marrow Transplant Service, the Transfusion Service and the Renal Service.
