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Revolutionizing Sickle Cell Care with Real-World Data

OBJECTIVE

To transform the standard of care for individuals with sickle cell disease (SCD) by leveraging patient-generated real-world data and promoting a holistic, personalized medicine approach.

You Are A Marvel (YAAM)

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The Challenge

Individuals with sickle cell disease (SCD) face chronic challenges that demand innovative, patient-centered solutions. YAAM sought to revolutionize care through real-world data, creating a system that prioritizes health equity, personalized medicine, and actionable insights.

The Solution

In collaboration with the Sickle Cell Disease Foundation (SCDF) and the Center for Inherited Blood Disorders (CIBD), The Hills Tandem (THT) co-architected the groundbreaking “You Are A Marvel” (YAAM) initiative. Focused on leveraging patient-generated real-world data (RWD), this program sets a new standard in chronic disease care.

Patient-Centered Innovation: Designed a system deeply rooted in the lived experiences of SCD patients.

Holistic & Personalized Medicine: Utilized real-world data to predict and mitigate SCD crises, improving patient outcomes and quality of life.

Collaborative Research: Completed two pivotal RWD studies funded by SCDF and Pfizer, collecting over 73 million data points to advance precision medicine.

Key Results

Data-Driven Insights: Enabled better understanding of SCD triggers through over 73 million data points.

Significant Studies: Led two RWD projects impacting 65 patients, marking the first steps toward precision medicine.

Community Engagement: Unified patients, clinicians, and researchers for impactful collaboration.

The Impact

YAAM is redefining sickle cell care by centering patient voices and utilizing real-world data. Its transformative model is expanding healthcare research to deliver personalized care solutions for underserved populations.

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