The ALSTATE (Alabama Lifespan Sickle Cell Tracking Access Toward Equality) network was established in 2019 to learn the fundamentals of sickle cell disease surveillance. Sickle cell disease (SCD) is an inherited hemoglobinopathy that results in significant comorbidities including chronic pain, multi-organ dysfunction and shortened lifespan. Unfortunately, there is not a registry in place to understand the healthcare utilization or outcomes of those affected by SCD in the United States. Based on newborn screening and earlier data assessments, the state of Alabama has a large population of affected individuals with SCD. To better understand their disease, healthcare use, and overall demographics, it is necessary to that we implement sickle cell disease surveillance.
ADAVANCING ALSTATE is our current application for the SCD sickle cell data collection. Our multidisciplinary team has grown over the last year and now includes new members with additional expertise as well as to two individuals living with SCD. We have also obtained IRB approval and are in process of obtaining data use agreements. We are now well suited and prepared to implement data collection and analysis. We are applying to the core component of this program. Our team includes experts in sickle cell disease, surveillance and public health, bio and clinical informatics, and statistics. In collaboration with our state membership, we will continue to build relationships and form surveillance goals as well as develop plans for utilization of SCDC findings. To enhance our program, we will add funding for an ALSTATE advisory board to include additional representation from the community including additional sickle cell disease clinicians.
We have devised strategies to achieve the goals of the NOFO. Our strategies are in engagement and partnership, data gathering and assessment, and dissemination and education. We are planning both local and regional meetings to enhance dissemination and advocacy as well presentations in national forums. Further, we have plans to evaluate the knowledge of patients, providers and policy makers in the area of surveillance in order to better understand how to inform them of changes. These ongoing measurement tools will allow for flexibility to ensure ongoing engagement with the community.
ALSTATE looks forward to participating and prioritizing additional SCDC data requests and working with those awarded on publications. It is very important that data from this project be used for both education, advocacy and future clinical planning and registry development. Together, we can improve outcomes in sickle cell disease, starting in Alabama with ADAVANCING ALSTATE.