Advancing Monogenic Diabetes Research and Clinical Care by Creating a Data Commons: The Precision Diabetes Consortium (PREDICT)

dc.contributor.authorMcCullough, Michael E.
dc.contributor.authorLetourneau-Freiberg, Lisa R.
dc.contributor.authorNaylor, Rochelle N.
dc.contributor.authorGreeley, Siri Atma W.
dc.contributor.authorBroome, David T.
dc.contributor.authorTosur, Mustafa
dc.contributor.authorKreienkamp, Raymond J.
dc.contributor.authorCobry, Erin
dc.contributor.authorRasouli, Neda
dc.contributor.authorPollin, Toni I.
dc.contributor.authorUdler, Miriam S.
dc.contributor.authorBillings, Liana K.
dc.contributor.authorDesouza, Cyrus
dc.contributor.authorEvans-Molina, Carmella
dc.contributor.authorBirz, Suzi
dc.contributor.authorFurner, Brian
dc.contributor.authorWatkins, Michael
dc.contributor.authorOtt, Kaitlyn
dc.contributor.authorVolchenboum, Samuel L.
dc.contributor.authorPhilipson, Louis H.
dc.contributor.departmentPediatrics, School of Medicine
dc.date.accessioned2025-02-27T11:38:21Z
dc.date.available2025-02-27T11:38:21Z
dc.date.issued2025-01-09
dc.description.abstractMonogenic 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.
dc.eprint.versionFinal published version
dc.identifier.citationMcCullough ME, Letourneau-Freiberg LR, Naylor RN, et al. Advancing Monogenic Diabetes Research and Clinical Care by Creating a Data Commons: The Precision Diabetes Consortium (PREDICT). J Diabetes Sci Technol. Published online January 9, 2025. doi:10.1177/19322968241310896
dc.identifier.urihttps://hdl.handle.net/1805/46089
dc.language.isoen_US
dc.publisherSage
dc.relation.isversionof10.1177/19322968241310896
dc.relation.journalJournal of Diabetes Science and Technology
dc.rightsPublisher Policy
dc.sourcePMC
dc.subjectData commons
dc.subjectData dictionary
dc.subjectData governance
dc.subjectData sharing
dc.subjectData standards
dc.subjectMonogenic diabetes
dc.titleAdvancing Monogenic Diabetes Research and Clinical Care by Creating a Data Commons: The Precision Diabetes Consortium (PREDICT)
dc.typeArticle
ul.alternative.fulltexthttps://pmc.ncbi.nlm.nih.gov/articles/PMC11713946/
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