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abstracts & posters

Sickle treatment and outcomes research in the midwest (storm) – a regional network for improving the management of sickle cell disease

key information

source: American Society of Pediatric Hematology/Oncology

year: 2017

authors: Lisa M. Shook, Christina B. Farrell, Sandra Fuller, Karen A. Kalinyak, Stephen C. Nelson, Brandon M. Hardesty, Kay L. Saving, Wanda J. Whitten-Shurney, Julie A. Panepinto, Lori E. Crosby


Sickle cell disease (SCD), which affects the red blood cell, is the most common genetic disorder in the United States. There are approximately 100,000 patients with SCD in the United States and approximately 15,000 in the Midwest. Sickle Cell Treatment and Outcomes Research in the Midwest (STORM) is a six-state regional learning network funded by Health Resources and Services Administration (HRSA) to improve outcomes for individuals with SCD in Indiana, Illinois, Ohio, Michigan, Minnesota and Wisconsin. Led by the Cincinnati Comprehensive Sickle Cell Center in collaboration with the James M. Anderson Center for Health Systems Excellence, STORM brings together pediatric and adult providers to collaborate with patients and families to 1) address the lack of providers knowledgeable evidence-based management of SCD and 2) improve under-utilization of hydroxyurea by using provider education strategies and quality improvement methods.

STORM’s global aim is to build a sustainable network to improve outcomes and care for patients with SCD in the Midwest. Our current smart aim is to improve health for patients with SCD, as measured by a 20% increase in the eligible number of patients prescribed hydroxyurea, based on recommendations in the NHLBI Evidence-Based Management of SCD guidelines.

Sites received training in QI methods and are now conducting site-specific QI projects to address local needs. Regional data collection efforts are ongoing; currently, there have been over 300 patients and 1700 patient encountered entered into REDCap. Preliminary results show that the number of eligible patients prescribed hydroxyurea has increased 20% over time, and 100% of eligible patients have been offered hydroxyurea in the STORM network.

Preliminary data suggests that improvements will continue as sites become more experienced in QI methods. More regional patient-level data will also become useful in guiding future regional quality improvement efforts.

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