Sickle Cell Data Collection Program – Core Component
Minnesota Department of Health
Project Abstract Summary
The purpose of the Minnesota Sickle Cell Data Collection Program (SCDC) —Core Component is to establish a robust and sustainable Sickle Cell Disease (SCD) surveillance and epidemiologic system that is integrated within the MDH Newborn Screening and Longitudinal Follow-Up programs. Minnesota will include data from newborn screening, vital records, emergency departments, hospital discharges, Medicaid and other public programs (enrollment, utilization, social drivers), MN All Payer Claims Database (public and commercial payers, Medicare), and clinics serving patients with SCD. The SCDC program will use a participatory model to engage a statewide stakeholder group, including patients and their families, health care systems (i.e. providers, medical groups, insurers), community-based organizations, and decision-makers in implementing education programs, coordinated holistic care, policy change, addressing health inequities and, ultimately, improving the quality of life and outcomes for SCD patients and their families. Minnesota will collaborate with the CDC SCDC program and other State grantees to implement a SCDC system based on standardized methods, provide summary data to CDC for aggregation with other State programs, and actively participate in collaborative epidemiologic studies.
Key SCDC outcomes include:
• increase standardized methods for SCD surveillance (short-term)
• increase our knowledge of SCD incidence, prevalence, and mortality (short-term)
• increase our understanding of SCD age, gender, race, ethnicity, cultural, socioeconomic, and geographic demographics and disparities (short-term)
• increase our understanding of primary, specialty, and acute health care utilization patterns (short-term)
• increase the quality and availability of SCD educational, health care, and community resources available to SCD patients and their families (intermediate).
Other intermediate and long-term outcomes are a) the availability of aggregate and individual level data; b) providing comprehensive care across the lifespan; c) coordinating transitions from pediatric to adult care; d) improving delivery of and transitions from the ED and hospital care; e) addressing racial bias, racial disparities, and other health inequities; f) implementing educational programs for various audiences on SCD incidence, prevalence, care, outcomes, and mortality; and g) conducting innovative studies to improve care, treatments, services, and outcomes for SCD patients.
To achieve these outcomes Minnesota will: a) establish a multidisciplinary team to design, implement, and use the data from the SCDC system, b) assure acquisition and use of data sources relevant to addressing important SCDC objectives and outcomes, c) collaborate with the CDC and State grantees to ensure a standardized implementation of the SCDC system, evaluation of the system, prioritization of analyses, and reporting of aggregate level SCD data, and d) collaborate in the dissemination of the SCDC data locally, regionally, and nationally.