MIDWEST REGIONAL COLLABORATIVE Description of RCC Activities
About the Midwest RCC
Domain 1: Increase the number of providers treating individuals with sickle cell disease using the National Heart, Lung, and Blood Institute (NHLBI) Evidence-Based Management of Sickle Cell Disease Expert Panel Report • Several Midwest sites worked on ways to improve rates of immunization, including improving team preparation for clinics; reviewing guidelines with staff; assigning a coordinator to track immunizations; hiring a pharmacist; inserting a maintenance tab in the EHR; implementing quick order sets (an organized list where the clinician can quickly mark off which immunizations are needed); and making past due immunizations visible to patients in their MyChart, a patient-facing medical portal. • Several Program sites are participating in a multicenter HU study led by Cincinnati Children’s Hospital Medical Center (CCHMC), the lead organization of the Midwest RCC. The Hydroxyurea Optimization through Precision Study (HOPS) is examining how best to optimize HU use (Meier et al., 2020). HOPS will answer important questions about the clinical feasibility, benefits, and safety of pharmacokineticsbased guided dosing of HU for children with SCD. Lessons from this study have the potential to change the treatment paradigm from a standard weight-based approach to one that safely and effectively optimizes the laboratory and clinical response in an individual person living with SCD. Illinois • Maintains a manually entered spreadsheet document that is updated quarterly and then rechecked at the beginning of each month because of EHR system limitations. This site has worked on clinical improvements for this health area since 2013. They are able to report on successes. At baseline, they had about a 50 percent completion rate. They now consistently sustain over an 80 percent, nearing 100 percent many months, up-to-date rate. • Is implementing an HU quality improvement project to increase rates. Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
MAP LEGEND Regional Coordinating Center (RCC) Clinic/Participating Site Community-Based Organization
Lead Organization Cincinnati Children’s Hospital Medical Center Principal Investigator • Lisa Shook, DHPE, MCHES Data Manager • Christina Bennett Farrell, MPH, CPM Participating Clinics • IL – Children’s Hospital of Illinois-Peoria • IN – Indiana Hemophilia & Thrombosis Center • MI – Sickle Cell Disease Association of Michigan • MN – Children’s Minnesota
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