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Published on: March 15, 2024
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.
Abstract:
Monogenic diabetes mellitus (MDM) is a group of relatively rare disorders caused by pathogenic variants in key genes that result in hyperglycemia. Lack of identified cases, along with absent data standards, and limited collaboration across institutions have hindered research progress. To address this, the UChicago Monogenic Diabetes Registry (UCMDMR) and UChicago Data for the Common Good (D4CG) created a national consortium of MDM research institutions called the PREcision DIabetes ConsorTium (PREDICT). Following the D4CG model, PREDICT has successfully established a multicenter MDM data commons. PREDICT has created a consensus data dictionary that will be utilized to address critical gaps in understanding of these rare types of diabetes. This approach may be useful for other rare conditions that would benefit from access to harmonized pooled data.
Insights
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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