Publication Date
1-9-2025
Journal
Journal of Diabetes Science and Technology
DOI
10.1177/19322968241310896
PMID
39781649
PMCID
PMC11713946
PubMedCentral® Posted Date
1-9-2025
PubMedCentral® Full Text Version
Post-print
Published Open-Access
yes
Keywords
monogenic diabetes, data commons, data sharing, data standards, data dictionary, data governance
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.
Included in
Endocrine System Diseases Commons, Endocrinology, Diabetes, and Metabolism Commons, Internal Medicine Commons, Medical Sciences Commons, Pediatrics Commons
