Metadata-Centered Development for a Community Registry System

1. Metadata-Centered Development for a Community Registry System Andrew Waters, BS1, Julie Frund, BS1, Michelle Smerek, BS1, Anita Walden, BA1, Guilherme Del Fiol, MD, PhD2 1Duke Translational Medicine Institute, Durham, NC , 2University of Utah, Salt Lake City, UT “Rewriting the textbook of medicine” Introduction The Measurement to Understand the Reclassification of Disease Of Cabarrus / Kannapolis (MURDOCK) study is a longitudinal health study aimed at reclassifying health and disease by investigating genotype and phenotype associations.1 As part of the study, a large sample of volunteer participants is being recruited in Cabarrus county/Kannapolis, North Carolina. To support participant recruitment efforts, software infrastructure has been developed including a community registry and a biorepository. One of the community registry’s purposes was to house self-reported participant data and participant data imported from electronic health record (EHR) systems. Requirements Enable sharing of participant data with multiple research studies through explicit data definitions and an automatically generated data dictionary Easily adapt to frequent changes in data collection forms imposed by regulations and research requirements Design Challenges Handling hierarchical/recursive data (i.e., data elements composed of other data elements) Supporting negation (e.g., “no history of diabetes mellitus”) Integration with user interface Aligned with international standard data models and terminologies that are supported by EHR systems Manage multiple concurrent versions of data collection forms Contact Information Julie Frund julie.frund@duke.edu 919-681-1079 Acknowledgements The MURDOCK Study is funded by the David H. Murdock Institute for Business and Culture and the Duke CTSA grant (UL1RR024128). . Meta Data Participant Reported Data Storage Results Provides self-describing data at a finely granular level Accommodates data storage for over 9,000 participants and 20,000 participant questionnaires (including follow-up) Contains 131 data elements Supports 4 different form versions Disclosure Information Authors listed here have nothing to disclose concerning possible financial or personal relationships with commercial entities that may have a direct or indirect interest in the subject matter of this presentation. Future Plans Dynamic metadata-driven user interface generation Import data from EHR systems in use by clinicians in the Cabarrus county area. Figure 1 (above): Example question with a defined permissible value set to be modeled with Metadata. Figure 2 (above): Entity Relationship Diagram for Metadata model and corresponding participant reported data storage. The Metadata model is based on the ISO/IEC 11179 Metadata Registries (MDR) Standard2, HL7 v3 standards and the Virtual Medical Record Standard3. Each question is represented as a Data Element. For more information on the MURDOCK Study, please visit us online: www.murdock-study.com • References: 1MURDOCK project website. http://www.murdock-study.com 2 ISO/IEC 11179 Information Technology – Metadata Registries (MDR) . ISO/IEC JTC1 SC32 WG2 Development/Maintenance. http://metadata-standards.org/11179 / 3The Virtual Medical Record Standard. Health Level Seven International. http://wiki.hl7.org/index.php?title=Virtual_Medical_Record-(vMR)