Visit the Department of Pediatrics
Research is at the heart of the University of Miami Sickle Cell Program’s mission to improve outcomes for individuals living with sickle cell disease. Our team leads and participates in a wide range of federally funded, community-driven, and industry-sponsored studies focused on early diagnosis, access to care, and innovative treatments. Through data collection, clinical trials, and quality improvement initiatives, we are working to transform care delivery and shape the future of sickle cell treatment both locally and nationally.
Florida Sickle Cell Data Collection Program
The Florida SCDC is a federally-funded surveillance program for individuals with sickle cell disease living in Florida. Its purpose is to understand the epidemiology of SCD (where do patients live and demographics) and what are the healthcare services provided to these individuals with an ultimate goal of improving access to care through healthcare policy change. Several databases are linked to determine population and services received. From 2012-2024, over 14,000 individuals with SCD have been identified receiving Medicaid throughout Florida, one of the states with the highest number of people living with SCD.
Sickle Cell Treatment Demonstration Program
This program is also federally funded. We participate with other states in the southeastern part of the United States in expanding awareness and provider education about SCD. Our quality improvement project centers on improving pain management in the emergency department.
Sickle Cell Newborn Screening Follow-Up (NBS FU)
Another federally funded program. This program links our center to the community through engagement of four sickle cell community-based organizations. NBS FU improves the follow-up of babies identified with SCD through newborn screening, with the contribution of community partnerships and community health workers.
Industry-sponsored clinical trials
Development of new medications or treatments for SCD is very important for us. Therefore, we are engaged in several clinical trials that test new medications in a placebo-controlled fashion.