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Advancing Monogenic Diabetes Research and Clinical Care by Creating a Data Commons: The Precision Diabetes Consortium
Michael E McCullough1, Lisa R Letourneau-Freiberg1, Rochelle N Naylor1,2
1Department of Medicine, The University of Chicago, Chicago, IL, USA.
Journal of Diabetes Science and Technology
|January 9, 2025
Summary
Researchers established the PREcision DIabetes ConsorTium (PREDICT) to pool data for monogenic diabetes mellitus (MDM). This national consortium created a data commons and dictionary to advance understanding of rare diabetes types.
Area of Science:
- Endocrinology
- Genetics
- Data Science
Background:
- Monogenic diabetes mellitus (MDM) comprises rare genetic disorders causing hyperglycemia.
- Research is limited by scarce cases, lack of data standards, and poor institutional collaboration.
Purpose of the Study:
- To establish a national consortium for monogenic diabetes mellitus research.
- To create a multicenter data commons for harmonized data.
Main Methods:
- Formation of the PREcision DIabetes ConsorTium (PREDICT) national consortium.
- Development of a consensus data dictionary for MDM research.
- Leveraging the UChicago Data for the Common Good (D4CG) model.
Main Results:
- Successfully established a multicenter MDM data commons.
- Created a consensus data dictionary to standardize MDM data.
- Facilitated collaboration among MDM research institutions.
Conclusions:
- The PREDICT consortium addresses critical gaps in understanding rare diabetes.
- This data commons and dictionary approach can advance MDM research.
- The model may be applicable to other rare diseases requiring pooled data.
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