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Working
to Improve Outcomes

What is Sickle Cell Disease (SCD)?

SCD is the most commonly inherited blood disorder affecting approximately 90,000 Americans and 1 out of 500 African-Americans 2. SCD is caused by a genetic mutation in hemoglobin, which predisposes red blood cells to become rigid and misshapen, "sickle"-shaped. SCD is a lifelong condition complicated by acute and chronic medical problems, which can be life-threatening and disabling. Common complications include episodic severe pain, chronic hemolytic anemia, increased vulnerability to infection and multi-organ damage 3. SCD adversely impacts the physical, emotional, social, and vocational lives of both the affected individuals and their families across the lifespan.

STORM

is a collaborative effort that implements quality improvement projects and provider education with pediatric and hematology practices to build a functional, sustainable, synergistic network to improve the outcomes and care for patients with sickle cell disease (SCD) in the Midwest.

OUR MISSION

is to improve the quality of life and health outcomes for all Midwesterners with sickle cell disease.

OUR GOALS

increase the number of providers treating individuals with sickle cell disease (SCD) using the National Heart, Lung and Blood Institute (NHLBI) Evidence-Based Management of SCD Expert Panel Report; Expand our STORM TeleECHO telementoring project to increase the number of providers administering evidence-based sickle cell care;

Develop and implement strategies, such as quality improvement and provider education to improve access to quality care with an emphasis on individual and family engagement/partnerships, adolescent transition to adult life, and care in a medical home.