Browsing by Subject "Data standards"

Now showing 1 - 2 of 2
  • Thumbnail Image
    Item
    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.
  • Thumbnail Image
    Item
    Data Integration and Interoperability for Patient-Centered Remote Monitoring of Cardiovascular Implantable Electronic Devices
    (MDPI, 2019-03-17) Daley, Carly; Toscos, Tammy; Mirro, Michael; BioHealth Informatics, School of Informatics and Computing
    The prevalence of cardiovascular implantable electronic devices with remote monitoring capabilities continues to grow, resulting in increased volume and complexity of biomedical data. These data can provide diagnostic information for timely intervention and maintenance of implanted devices, improving quality of care. Current remote monitoring procedures do not utilize device diagnostics to their potential, due to the lack of interoperability and data integration among proprietary systems and electronic medical record platforms. However, the development of a technical framework that standardizes the data and improves interoperability shows promise for improving remote monitoring. Along with encouraging the implementation of this framework, we challenge the current paradigm and propose leveraging the framework to provide patients with their remote monitoring data. Patient-centered remote monitoring may empower patients and improve collaboration and care with health care providers. In this paper, we describe the implementation of technology to deliver remote monitoring data to patients in two recent studies. Our body of work explains the potential for developing a patent-facing information display that affords the meaningful use of implantable device data and enhances interactions with providers. This paradigm shift in remote monitoring-empowering the patient with data-is critical to using the vast amount of complex and clinically relevant biomedical data captured and transmitted by implantable devices to full potential.