Tuesday, May 20, 2025
5/20/2025
Arizona Sickle Cell Data Collection Program - Sickle Cell Disease (SCD) is an inherited monogenic disorder characterized by chronic anemia, unpredictable pain episodes and multisystem organ damage, resulting in significant lifelong morbidity and early mortality. There are about 100,000 patients living with SCD in the US. However, the incidence varies widely by state and race/ethnicity, with SCD occurring ~1 in 360 African American births, compared to ~1 in 16,3000 Hispanic births. Life expectancy for patients with SCD has improved over the past few decades in high-income countries from a combination of measures, including newborn screening, penicillin prophylaxis, stroke prevention and disease-modifying therapies, with childhood survival exceeding 90%. Despite these gains, adults living with the disease often have poor quality of life and a reduced life expectancy of 30 years compared to the general population. Health delivery for patients with sickle cell disease is also plagued by myriad problems including imprecise knowledge about the disease incidence/prevalence, natural history of the disease and health outcomes, lack of access to care, lack of knowledgeable healthcare providers with expertise in sickle cell disease care; low uptake of disease-modifying therapies/curative treatments and lack of funding for research and care delivery for patients living with the disease. Demographic projections estimate the burden of sickle cell disease to grow internationally, with an estimated annual number of newborns with sickle cell anemia worldwide exceeding 400,000 by 2050, compared to about 230,000 in 2010. Therefore, there is an urgent need to address the current gaps in knowledge of disease epidemiology, natural history, and health outcomes and to improve healthcare delivery, quality of life, and survival for patients with SCD. Similar to several states in the US, there is a dearth of information about SCD epidemiology, health utilization, and outcomes in Arizona, which negatively impacts healthcare delivery for patients in our State. The overarching goal for this surveillance program is to understand SCD at the population level in Arizona, to learn about the epidemiology of SCD, healthcare utilization, and health outcomes in order to effect meaningful policy changes that will improve access to care, quality of life and health outcomes for patients and families living with SCD, using multistakeholder input. To achieve this goal, we propose to (1) Establish a modern standardized method of SCD surveillance in Arizona by merging data sets from multiple sources, including newborn screening, vital records, hospital discharge data and clinical sites for surveillance (2) Increase understanding about the epidemiology and healthcare utilization patterns of individuals with SCD in Arizona (3) Monitor and increase understanding of health outcomes of patients with SCD in Arizona. (4) Increase ability to describe social determinants of health, access to healthcare and health disparities related to SCD in Arizona by examining insurance status, access to hematologists and hematology centers of care in the State, and patient distance/travel times to sub-specialty care (5) Increase understanding about the epidemiology of SCD in public health workers, health providers and the sickle cell community in Arizona (6) Increase availability and accessibility of SCD surveillance data to support policies that affect the lives of people with SCD (7) Increase availability and accessibility of educational materials to facilitate shared decision making about SCD related healthcare. The information generated from the Arizona Sickle Cell Data Collection Program (SCDC) will be vital in evaluating healthcare delivery and outcomes for patients with SCD, informing stakeholders about policy areas needed to effect change and allocation of resources, and will contribute invaluable information to the national SCDC program database about SCD in the Southwest.
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).