Sickle Cell Data Collection (SCDC) Program
In 2023, the Texas Department of State Health Services (DSHS) applied for and received funding from the Centers for Disease Control and Prevention (CDC) to establish a state sickle cell data collection system that informs sickle cell practices and policies in Texas. Texas SCDC is one of 16 states funded by the CDC.
Texas SCDC is a one-time state data collection effort and is not a state sickle cell disease registry. Texas SCDC serves as the foundation for measuring sickle cell burden in Texas by assessing long-term trends in sickle cell disease diagnosis, treatment, and healthcare access. In the absence of population-based surveillance, Texas SCDC provides information on all individuals with sickle cell disease in Texas, regardless of age, insurance status, or geography.
The goal of Texas SCDC is to collect, maintain, and disseminate high quality sickle cell data that will contribute to improving diagnoses, treatments, survival, and quality of life for all individuals with sickle cell disease in Texas.
What is Sickle Cell Disease?
Sickle cell disease is a group of inherited blood disorders resulting in abnormal hemoglobin. Hemoglobin is found in red blood cells and is a protein that carries oxygen. Abnormal hemoglobin from sickle cell disease causes red blood cells to become hard, sticky, and sickle shaped. This can cause severe pain, chronic fatigue, stroke, serious infections, and organ damage.
There are several types of sickle cell disease, often referred to as sickle cell disease genotypes. Which genotype of sickle cell disease someone has depends on the genes they inherited from their parents. Some genotypes of sickle cell disease are more severe than others. In Texas, approximately 200 babies with sickle cell disease are identified each year with newborn screening.
For more information, please visit the Texas Newborn Screening Sickle Cell Page at Sickle Cell Disease | Texas DSHS.
| Sickle Cell Disease Genotype | Information |
|---|---|
| Hemoglobin SS or HbSS | HbSS is the most common type of sickle cell disease (SCD). A person with HbSS inherits two genes, one from each parent, that code for hemoglobin "S." Hemoglobin S is an abnormal form of hemoglobin that causes the red blood cells to become rigid and sickle shaped. This is commonly called sickle cell anemia and is usually the most severe form of the disease. |
| Hemoglobin SC or HbSC | A person with HbSC inherits a hemoglobin S gene from one parent and a gene for a different type of abnormal hemoglobin called "C" from the other parent. This is usually a milder form of SCD. |
| HbS beta+ thalassemia | A person with HbS beta+ thalassemia inherits a hemoglobin S gene from one parent and a gene for beta thalassemia, another type of hemoglobin abnormality, from the other parent. A person with HbS beta+ thalassemia produces varying amounts of hemoglobin A. HbS beta+ thalassemia is a milder form of SCD. |
| HbS beta0 thalassemia | A person with HbS beta0 thalassemia inherits a hemoglobin S gene from one parent and a gene for beta thalassemia, another type of hemoglobin abnormality, from the other parent. A person with HbS beta0 thalassemia does not produce hemoglobin A. HbS beta0 thalassemia is a more severe form of SCD. |
| Other SCD Disorders | Hemoglobin SD (HbSD), hemoglobin SE (HbSE), and hemoglobin SO (HbSO) are other types of sickle cell disease. A person with one of these forms of SCD inherits one hemoglobin S gene and one gene that codes for another abnormal type of hemoglobin ("D," "E," or "O"). These are very rare forms of SCD with varying severity. |
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Resources
- Sickle Cell Data Collection (SCDC) Program | CDC
- Sickle Cell Disease | Texas DSHS
- Sickle Cell Disease | CDC
- Sickle Cell Disease Community-Based Organizations