Chapel Hill, N.C.-based UNC School of Medicine was awarded up to $35 million to lead a research initiative with Atlanta-based Emory University to build a data resource for AI-driven rare disease diagnosis.
The four-and-a-half-year project is funded through the Advanced Research Projects Agency for Health’s Rare Disease AI/ML for Precision Integrated Diagnostics program, according to an Aug. 31 news release. ARPA-H is an agency within HHS.
The UNC and Emory teams will acquire data from patient registries and real-world sources, drawing on health records, insurance claims, medical imaging, video technologies and patient surveys, the release said. Other program components will focus on direct patient data acquisition and on building a research platform for the rare disease community.
Melissa Haendel, PhD, the Sarah Graham Kenan distinguished professor in UNC’s department of genetics and lead scientist on the project, said in the release the goal is to train models on data-rich sources that can then be deployed in settings without comparable data, supporting clinical decision tools that diagnose patients or move them along in the process.
Richard Moffitt, PhD, co-lead on the project and associate professor in the department of hematology and medical oncology at Emory University School of Medicine, said in the release that data on rare disease patients is not centrally available because each condition affects relatively few people, and that limited access to specialty care, insurance barriers and distance from rare disease experts hinder data collection.
The UNC School of Medicine has more than 2,000 faculty members and is affiliated with UNC Health. Emory University enrolls about 15,000 students across nine schools and colleges.
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