Monday, February 6, 2023
2/6/2023
PROJECT ABSTRACT SUMMARY Sickle cell disease (SCD) is a rare genetic condition that affects approximately 100,000 individuals in the United States of America. The Newborn Screening Program exists in every state of the country to help identify babies born with SCD. However, there is no national surveillance system for SCD. This results in a lack of knowledge about the epidemiology and natural history of the disease. In addition to Newborn Screening data, there are various other existing data sources including Vital Records, State Medicaid data and electronic health records (EHR) data that can help identify individuals with SCD. These data collectively are a rich source to inform healthcare practices and health outcomes of those with SCD, however they are currently not linked. In this project we propose to establish a sickle cell data collection program, leveraging and linking the various data sources for the state of Wisconsin. Specifically, we will develop a Wisconsin SCD (WI-SCD) Registry, with individual level data linked from the State’s Newborn Screening Laboratory, Vital Records, Medicaid, and EHR. The program will result in standardized data collection methods for all individuals with SCD in Wisconsin, which will be disseminated regularly in an aggregate manner. The proposed program will establish data collaborations from partners across the state of Wisconsin and engagement with stakeholders including researchers, clinicians, policy makers and individuals with SCD, to inform policies and improve health outcomes for individuals with SCD in Wisconsin. This will result in a comprehensive understanding of the epidemiology, clinical practices, laboratory result profiles and health outcomes for the SCD population in Wisconsin. Our proposed application has the unique strength of being able to link EHR data and data from state partners for the majority of individuals living with SCD in Wisconsin. The principal investigator (Singh) has extensive experience analyzing big data including EHR and Medicaid data for the SCD population, making her well-qualified to lead the proposed project. The co-Investigator (Panepinto) is a pediatric hematologist and a well-established researcher with multiple years of experience in health services research and SCD. All program personnel have worked together on numerous federally funded projects and have a track record of working efficiently as a team. The program team’s distinct experience, along with engagement with SCD stakeholders, will ensure the success of the proposed WI-SCD Registry.
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).
