Thursday, April 25, 2024
4/25/2024
BIRTH DEFECTS SURVEILLANCE IN TEXAS:METHODOLOGICAL ENHANCEMENT AND IMPACTFUL DATA UTILIZATIONPROJECT ABSTRACTThe Texas Birth Defects Registry is one of the largest active, population-based birth defects surveillance systems in the world, ascertaining all major structural birth defects and chromosomal disorders. The Birth Defects Epidemiology and Surveillance Branch, home of the Registry at the Texas Department of State Health Services (DSHS), started in 1994 and by 2013 had registered 260,000 cases. The publication history for this program and its collaborators is extensive and varied, with 300 peer-reviewed articles on the epidemiology and genetics of birth defects, nearly all of which include data and co-investigators from this Registry. This grant, if awarded to Texas, will help greatly to move the Registry forward in several areas. First, the Epidemiology and Surveillance Branch will evaluate possible under-ascertainment of cases of major birth defects in the Registry using important new data sources: (1) statewide patient-level data from hospital inpatient, outpatient, and emergency visits; (2) Texas Medicaid data, housed at a related agency (HHSC) and covering 55% of all Texas children: and (3) a database of passively reported chromosomal/genetic laboratory diagnoses for mothers and infants. Working alongside DSHS/HHSC staff and external project collaborators, a high-level research specialist funded by this grant will evaluate and publish peer-reviewed articles on case ascertainment and completeness using these new data in the Registry. Results will ultimately result in more complete ascertainment.A second area of concentration is the reach of program information to additional external entities, including the general public and affected families. The program appears to perform well in communicating with Title V and collaborators about Registry data and research findings; however, we would like to improve our website and increase interactio n with the professional and lay public and better understand the roles of professional groups, support groups, and multidisciplinary clinics. A new CDC-funded program specialist will work with Registry, DSHS, and HHSC staff and university collaborators to amplify the program?s reach and ensure messaging about birth defect risk factors in Title V program informational materials. In addition, two registry-based family outreach initiatives will be implemented and evaluated: one an informational effort on available services and the other on preventing certain birth defects. Through interviews, information will also be received on the use of multi-disciplinary clinics. A final area of concentration is with critical congenital heart defects (CCHDs) targeted for pulse oximetry screening at birth. We will work with partners/collaborators to compare the Registry with other datasets for overlap of cases; evaluate and increase the ascertainment of CCHDs; provide detailed annual neonatal and infant case-fatality data for the 12 CCHD conditions; and utilize statewide Registry and hospital data to examine outcomes of children with CCHDs during and after infancy.
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).
