Glocal Clinical Registries: Pacemaker Registry Design and Implementation for Global and Local Integration – Methodology and Case Study

• DOI: 10.1371/journal.pone.0071090
• Publication Date: 2013-07-25T22:24:16Z
• Authors: Kátia Regina da S...; Roberto Costa; Elizabeth Sartori...; Marianna Sobral L...; Caio Marcos de Mo...; Martino Martinell...; José Eduardo Santana; João Ricardo Nick...; Ricardo Pietrobon; Jacson V. Barros
• Keywords: Electronic data capture; Electronic data

Background The ability to apply standard and interoperable solutions for implementing managing medical registries as well aggregate, reproduce, access data sets from legacy formats platforms advanced operating systems are crucial both clinical healthcare biomedical research settings. Purpose Our study describes a reproducible, highly scalable, framework device registry implementation addressing local quality components global linking problems. Methods Results We developed involving the following steps: (1) Data standards definition representation of workflow, (2) Development electronic case report forms using REDCap (Research Electronic Capture), (3) collection according workflow and, (4) augmentation by enriching database with health records, governmental linked open collections, (5) control (6) dissemination through Web site. adopted all applicable standardized elements proposed American College Cardiology / Heart Association Clinical Standards, variables derived cardiac devices randomized trials Interchange Standards Consortium. Local interoperability was performed between Health Record system. original set also augmented incorporating reimbursed values paid Brazilian government during hospitalization pacemaker implantation. By our repository Linked Trials (LinkedCT) we found 130 which potentially correlated registry. Conclusion This demonstrates how reproducible can be applied in constitute re-usable framework. Such approach has potential facilitate integration settings, being useful used other registries.