Tuesday, May 20, 2025
5/20/2025
Florida Sickle Cell Data Collection Program - The purpose of the Florida Sickle Cell Data Collection (SCDC) Program is aligned with the purpose of the overall SCDC Program which is to inform decisions and policies that may lead to significant improvements in the sickle cell disease (SCD) community. The University of Miami (UM) is applying for building capacity (Component B). We aim to create a state surveillance of individuals with SCD that is well structured and capable to achieve absolute privacy for collected data Florida is one of the states with the highest number of individuals with SCD according to population estimates by Hassell, Am J Prev Med, 2010. In 2022, we reviewed the Florida Medicaid claims database for years 2018-2021, finding 9,200 unique beneficiaries with SCD. Therefore, we expect to find at least 12,000 individuals in OneFlorida and other large databases. To survey the population of individuals with SCD, we will work with One Florida Data Trust, a health care data network with information from 16 million patients throughout Florida, the Department of Health Vital Statistics, Florida Medicaid, the Foundation for Sickle Cell Disease Research (FSCDR) and four sickle cell centers besides the University of Miami and FSCDR clinical programs. Clinical practices, Medicaid, FSCDR, and vital statistics will provide information in identifiable manner. OneFlorida will provide a limited data set. However, OneFlorida data managers will reach out to honest data brokers at individual centers to obtain identifiers after obtaining approval from the institutions with data sharing agreements. The Florida SCDC multidisciplinary team is composed of the following members: an expert on chronic disease surveillance (Dr. David J. Lee), a statistician with expertise in health care claims data analysis (Dr. Hua Li), a clinical provider for children with SCD (Dr. Ofelia Alvarez), a clinical provider for adults with SCD (Dr. Joy Ogunsile, tentative), a mental health care provider (Cheedy Jaja), a community health care provider (Naashon Ducille), a person with expertise in health communications (Dr. Lanetta Bronté-Hall), a government official knowledgeable about health care policies (Dr. Christopher Cogle, Florida AHCA Medicaid Chief Medical Officer), a SCD-community based organization member and a caregiver for a person with SCD (Kemba Gosier), and a person living with SCD (Naomie Pigatt). We will use the collected and stored data to understand the demographics of Florida’s populations of individuals with SCD, to compare and contrast SCD-related health care and health outcomes in different Florida regions, and to assess utilization patterns and mortality rates of the population across the state. This surveillance will make a difference for individuals and families impacted by SCD in Florida, adhering to CDC goals.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).