Observational research using clinical data - PKD Clinical Core
The Healthcare Enterprise Repository for Ontological Narration (HERON) at KUMC is a de-identified data repository that integrates multiple data sources including the Epic EHR, the GE IDX ambulatory clinic billing system, and other data registries including the KU cancer registry, vital status information from Social Security Administration and is updated monthly. There are currently approximately 1.5 billion real observations from the hospital, clinics, and research systems. The data are accessible in a completely de-identified manner using an NIH-funded, open-source, i2b2 platform, allowing users to search freely within it without requiring an IRB-approved protocol. HERON is available only to KUMC faculty members or investigators that are sponsored by a faculty member. Access to de-identified data is non-human subjects research and does not require approval by the HSC/IRB. Investigators that require fully identified data in conjunction with an ongoing clinical trial or to conduct an observational study should first obtain IRB approval and then submit a request. A bi-weekly clinic is offered to new users to learn about the system or find answers to specific questions.
HERON can also be used to search for participants in the Frontiers and Pioneers research participant registries, which include the PKD Research Participant Registry. Find instructions on how to search in HERON for participants and how to submit a request for their contact information.