Tuesday, May 20, 2025
5/20/2025
Sickle Cell Data Collection Program - The Texas Department of State Health Services (DSHS) is applying for Component B of the CDC’s funding opportunity (CDC-RFA-DD23-0002) entitled, “Sickle Cell Data Collection Program.” Sickle cell disease (SCD) is one of the most prevalent and clinically significant blood disorders in the country. The condition affects more than 100,000 people in the United States annually, 7,000 of which are estimated to be Texans. Each year in Texas, the DSHS Newborn Screening program identifies approximately 180 children with SCD and over 5,000 children with sickle cell trait (SCT). While all infants with SCD are identified at birth, there is no ongoing state surveillance of SCD. This results in large gaps in current understanding of SCD including the population prevalence, the natural course of the disease and its variable manifestations from one patient to another, and the healthcare needs. A state surveillance system of SCD is needed to fill in the gaps and to provide information on all individuals with SCD, regardless of age, disease severity, insurance status, or location to health care. In the absence of population-based surveillance, significant improvements in the health of the SCD community will remain elusive. DSHS is the principal agency responsible for protecting the public health of Texas residents and is well posed to build a state surveillance system of SCD. Since 1983, DSHS has been screening and coordinating resources for newborns with SCD through its newborn screening and clinical care coordination programs. DSHS houses many of the data sources, including vital records, hospital discharge, and newborn screening, needed for state surveillance and have staff members that routinely conduct disease surveillance. Also, DSHS will collaborate with key external partners, including Health Resources and Services Administration’s SCD treatment demonstration and follow-up programs, 8 specialty clinics that provide care for SCD, academic researchers, and SCD community-based organizations. The purpose of the project is to build an SCD surveillance system in Texas to determine the number of people with SCD, describe the population of affected individuals, understand the health care and health outcomes, and connect to community stakeholders. Ultimately, the information will inform practices and policies and improve quality and length of life for individuals with SCD. Improving health outcomes for the SCD population will require a collaborative effort among patients, communities, health care providers, policy makers, researchers, and federal and state health agencies. DSHS is committed to being a vital part of this collaborative effort.
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).