Sickle Cell Disease Programs in Florida

Abstract

The purpose of this study is to determine the incidence of Sickle Cell Disease (SCD) among infants born in Florida in 2008 and the extent to which the infant’s families follow up with their local SCD program. In order to determine the follow up rates, SCD programs in Florida will be identified and interviews conducted with the directors of each program. The interview will consist of a series of questions that are tailored to the services advertised on the website of each program. Data from the 2008 National Newborn Screening and Genetics Resource Center Report will be used to distinguish the total amount of infants screened and diagnose for SCD in the state of Florida From the surveys and data, a comparison will be made of the number of infants diagnosed in 2008 with SCD in Florida with the number screened positive for SCD at birth. The results will provide insight on pros and cons of existing SCD programs in Florida, thus, hoping to shed light on where individual SCD programs can improve to reach more infants who are screened for SCD.