The PURPOSE of Sickle Treatment and Outcomes Research in the Midwest (STORM) is to bring together the hematology and primary care communities to collaborate with patients and families on quality improvement and provider education initiatives to improve access and delivery of care and outcomes for patients with sickle cell disease (SCD) in the Midwest.
Our APPROACH is a collaborative effort that implements quality improvement projects provider education efforts with pediatric and adult hematology practices to build a sustainable network to improve the outcomes and care for patients with sickle cell disease (SCD) in the Midwest. STORM participation is at the institution level or practice level, whereas each participating institution identifies a lead physician and additional clinical faculty and staff who work as members of local site-specific and topic-specific improvement teams.
The Midwest region consists of eight states (IL, IN, MI, MN, ND, OH, SD, & WI) with a total population of roughly 52 million. A recent study found that there are approximately 15,000 individuals living with SCD in the Midwest. It is estimated over 700,000 African Americans and 35,000 Hispanic individuals with sickle cell trait live in this region 1. The eight states listed above have joined together to design, implement, and evaluate projects that will effectively engage our regional state partners and patients in a collaborative network to improve outcomes for all individuals with SCD in the Midwest.