Browsing by Subject "Data commons"

Now showing 1 - 2 of 2
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    Advancing Monogenic Diabetes Research and Clinical Care by Creating a Data Commons: The Precision Diabetes Consortium (PREDICT)
    (Sage, 2025-01-09) McCullough, Michael E.; Letourneau-Freiberg, Lisa R.; Naylor, Rochelle N.; Greeley, Siri Atma W.; Broome, David T.; Tosur, Mustafa; Kreienkamp, Raymond J.; Cobry, Erin; Rasouli, Neda; Pollin, Toni I.; Udler, Miriam S.; Billings, Liana K.; Desouza, Cyrus; Evans-Molina, Carmella; Birz, Suzi; Furner, Brian; Watkins, Michael; Ott, Kaitlyn; Volchenboum, Samuel L.; Philipson, Louis H.; Pediatrics, School of Medicine
    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.
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    ARDaC Common Data Model Facilitates Data Dissemination and Enables Data Commons for Modern Clinical Studies
    (IOS Press, 2024) Jin, Nanxin; Li, Zuotian; Kettler, Carla; Yang, Baijian; Tu, Wanzhu; Su, Jing; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public Health
    Modern clinical studies collect longitudinal and multimodal data about participants, treatments and responses, biospecimens, and molecular and multiomics data. Such rich and complex data requires new common data models (CDM) to support data dissemination and research collaboration. We have developed the ARDaC CDM for the Alcoholic Hepatitis Network (AlcHepNet) Research Data Commons (ARDaC) to support clinical studies and translational research in the national AlcHepNet consortium. The ARDaC CDM bridges the gap between the data models used by the AlcHepNet electronic data capture platform (REDCap) and the Genomic Data Commons (GDC) data model used by the Gen3 data commons framework. It extends the GDC data model for clinical studies; facilitates the harmonization of research data across consortia and programs; and supports the development of the ARDaC. ARDaC CDM is designed as a general and extensible CDM for addressing the needs of modern clinical studies. The ARDaC CDM is available at https://dev.ardac.org/DD.