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Rare Disease Research

Transforming Clinical Research through Advanced Data Sharing

The development of treatments for rare diseases faces a significant challenge – a lack of comprehensive data. Of the thousands of rare diseases known, only a few hundred have any viable treatments. One of the major roadblocks is the scarcity of natural history study data, which tracks the progression of diseases over time.

To overcome this, the Rare Diseases Clinical Research Network (RDCRN) was formed, supported by 23 research organizations. However, each organization had its own isolated data storage, making collaboration difficult. Quantum Insights partnered with the RDCRN to build a cloud-based solution hosted on AWS, migrating legacy data, and enabling seamless collaboration between organizations. This new platform solved data standardization, collaboration, and identity challenges by unifying all 23 organizations under standardized Case Report Form (CRF) templates.

A Collaborative Data Ecosystem

The cloud solution centralized all data in a HIPAA and IRB-compliant environment, supporting diverse formats (like images, videos, and genomics etc.) and giving researchers for the first time, faster, streamlined access to key information.The platform, designed as a Virtual Research Organization (VRO), provided shared tools, analytics, and datasets to foster collaboration. Later, Palantir Foundry integration enhanced data analysis and storage, letting researchers focus on science over technical hurdles.

Rare Disease Research Community

Quantum Insights standardized datasets across 200+ rare disease consortia, slashing inconsistencies and sparking faster discoveries. This game-changing solution delivered deeper insights, paving the way for finding cures faster for 25 million Americans battling rare diseases.

Driving Efficiency and Transparency

By transitioning to this collaborative cloud system, the RDCRN and its partners gained more flexibility in how they analyze and share data, driving scientific research forward. Researchers could now work together to solve complex challenges in rare disease treatment. Additionally, the U.S. government could now engage with the RDCRN in a more transparent, data-driven manner, facilitating smoother collaboration with the consortia.