Alabama Lifespan Sickle cell Tracking Access Towards Equality (ALSTATE) a sickle cell data collection program - Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. Due to minimal federal funding, a lack of cooperative efforts and a history of stigmatization and racism, there has never been a national approach to SCD. As a result, there are significant gaps in our current understanding of the variable manifestations of the longitudinal effects of the disease. The CDC began SCD surveillance in 2010 to enhance information on healthcare access for people living with SCD. These initial CDC efforts in California and Georgia lead to a increased understanding of the healthcare pathway of people with SCD and also shed light on significant concerns for early mortality. In the United States, most people with SCD are Black or African-American. Thus, many affected individuals live in the southeast where there are large, rural areas often with limited access to healthcare. To better understand the SCD population, we created the Alabama Lifespan Sickle cell Tracking Access Towards Equality (ALSTATE) network in 2020 and received the public health authority from the Alabama Department of Health to conduct SCD surveillance for the state. The interprofessional ALSTATE team have developed a successful model of data collection, de-duplication and linkage to create a SCD surveillance database. The results have shown that more than twice as many people are affected by SCD in Al than previously thought (4770 vs. 2300) and they remain at high-risk early mortality. For this project, AUGMENTING ALSTATE, we have goals. Our short-term goals include working with Sickle Cell Data Collection (SCDC) partners to improve and modernize the surveillance program while enhancing common data elements and the electronic storage of documents and SCDC-related publications. Site-specific short-term goals are to improve our communication and community-engagement as well as to target new partners in state health policy. Intermediate- and long-term goals include focused efforts to use SCDC data to change healthcare policy and reimbursement and to identify areas in need of additional SCD expertise where we can place affiliate clinics. We also plan to serve as a mentor site for new SCDC sites who are just starting the process of SCD surveillance. Our efforts in the SCDC ALSTATE program will also be cooperative with our HRSA-funded SCDTDP efforts (lead by the same PI, Dr. Kanter) and her NHLBI-funded grant efforts to improve patients access to care. Partnerships: Members of the ALSTATE network include all four SCD centers in AL (at UAB, Children’s of AL and USA), the UAB network of hospitals in Alabama, the Alabama Department of Public Health (including the newborn screening program, the office of Statistics and Vital Records, and Emergency Medical Services), AL Medicaid, Community-Based SCD Organizations, statewide hospitals in AL, and local stakeholders. We also have team members with expertise in epidemiology, communications and community engagement from the School of Public Heath, the Live HealtSmart Al project, a young woman who lives with SCD and is also a communications specialist and a grandmother of a young adult with SCD. Mission The goal of ALSTATE is to understand the care pathway of individuals living with SCD-both treated in SCD centers and within the community, identify areas in need of improvement and increased access to care and to influence advocacy and health policy to reach those living with SCD. Our multi-disciplinary team includes SCD clinical providers, researchers, informatics specialists, epidemiologists and statisticians as well as community stakeholders to implement sickle cell surveillance for Alabama.
