dc.contributor.author | Adagarla, Bhargav | |
dc.contributor.author | Connolly, Daniel W. | |
dc.contributor.author | McMahon, Tamara M. | |
dc.contributor.author | Nair, Manikandan | |
dc.contributor.author | VanHoose, Lisa D. | |
dc.contributor.author | Sharma, Priyanka | |
dc.contributor.author | D’Silva, Linda J. | |
dc.contributor.author | Waitman, Lemuel R. | |
dc.date.accessioned | 2015-03-11T17:52:07Z | |
dc.date.available | 2015-03-11T17:52:07Z | |
dc.date.issued | 2015-03-11 | en_US |
dc.identifier.uri | http://hdl.handle.net/2271/1303 | en_US |
dc.description.abstract | Integrated Data Repositories (IDR) allow clinical research to leverage electronic health records (EHR) and other data sources while Electronic Data Capture (EDC) applications often support manually maintained patient registries. Using i2b2 and REDCap, (IDR and EDC platforms respectively) we have developed methods that integrate IDR and EDC strengths supporting: 1) data delivery from the IDR as ready-to-use registries to exploit the annotation and data collection capabilities unique to EDC applications; 2) integrating EDC managed registries into data repositories allows investigators to use hypothesis generation and cohort discovery methods. This round-trip integration can lower lag between cohort discovery and establishing a registry. Investigators can also periodically augment their registry cohort as the IDR is enriched with additional data elements, data sources, and patients. We describe our open-source automated methods and provide three example registry uses cases for these methods: triple negative breast cancer, vertiginous syndrome, cancer distress. | en_US |
dc.publisher | University of Kansas Medical Center | en_US |
dc.subject.mesh | Medical Informatics | |
dc.subject.mesh | Electronic Health Records | |
dc.subject.other | Integrated Data Repositories | |
dc.subject.other | SEINE (Synthesizing EDC IDR Network Exchange) | |
dc.subject.other | REDCap | |
dc.subject.other | HERON (Healthcare Enterprise Repository for Ontological Narration) | |
dc.subject.other | other:i2b2 (informatics for integrating biology and the bedside) | |
dc.title | SEINE: Methods for Electronic Data Capture and Integrated Data Repository Synthesis with Patient Registry Use Cases | en_US |
dc.type | Article | en_US |
dc.rights.accessrights | openAccess | en_US |
dc.contributor.organization | Institution:The University of Kansas Medical Center | en_US |
dc.contributor.organization | Division of Medical Informatics. KUMC | en_US |
dc.contributor.organization | Department of Internal Medicine. University of Kansas Medical Center | en_US |
dc.contributor.organization | Department of Physical Therapy and Rehabilitation Science. University of Kansas. | en_US |