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Data Collection Program

University of Miami Lifespan Sickle Cell Program

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Florida Sickle Cell Data Collection Program (SCDC) is a CDC-sponsored sickle cell surveillance program for Florida. Sickle cell disease (SCD) is a blood genetic disorder which predominantly affects African Americans and Latinos. Florida is one of the states with the highest number of individuals living with SCD.

We acknowledge support for the University of Miami Department of Pediatrics and Department of Public Health Sciences by the Centers of Disease Control under grant NU58DD000038.

What is Sickle Cell Disease? 

Sickle Cell Disease (SCD) is a blood disorder that results from a single mutation in a hemoglobin gene, leading to the abnormal hemoglobin S. Hemoglobin is the protein that transport oxygen in the blood to the tissues and is present inside red blood cells. Sickle cell disease differs from sickle cell trait, in that individuals with sickle cell trait carry only one mutated gene and a normal hemoglobin gene. Individuals with SCD carry either two copies of the mutated gene or one copy of the mutated S gene and a gene leading to a different abnormal hemoglobin or hemoglobin production.

SCD is characterized by red blood cells that assume an abnormal crescent or “sickle” shape.  These sickled cells are weak and stiff, break easily, and often block blood flow in small blood vessels, which leads to recurring pain episodes, anemia, and other many other complications.  Diagnosis is made through blood tests, and newborn screening programs in the U.S. test for SCD at birth. Treatment involves pain management, adopting a healthy lifestyle, including adequate hydration, avoiding stressors, quitting smoking, and adequate sleep. Medications can ease symptoms.   Blood transfusions are used to manage some complications. Bone marrow transplantation can cure SCD and gene therapy is a new treatment option for patients who qualify.

Rationale

Sickle cell disease (SCD) is highly prevalent in Florida, with the state having one of the highest numbers of patients in the U.S. The prevalence rate in Florida is twice the national average, significantly impacting the health outcomes of many Floridians. Efforts are ongoing to improve treatment and support for those affected, including legislative actions to review and enhance Medicaid services for sickle cell patients.

Implementing the Florida SCDC Program can improve the current situation. Such program involves systematic data collection and monitoring of SCD patients, which can lead to several benefits; for instance, improving resource allocation, enhancing clinical outcomes, policy development, research advances, and patient education and support.

Project Goals

  • Establish a comprehensive SCD database.
  • Formalize enduring partnerships with multiple state entities for ongoing provision of SCD surveillance data.
  • Identify “hot spots” or high areas of individuals with SCD for targeted educational and improved clinical outreach
  • Inform policies providing a better understanding of SCD healthcare needs
  • Improve care for people living with SCD in Florida

Additional Resources