Phenotype Detection Registry System (PheDRS) - Implementation of a Generalizable Single Institution Clinical Registry Architecture

• Published in: AMIA ... Annual Symposium proceedings Vol. 2018; pp. 847 - 856
• Main Authors: Osborne, John D, Khare, Adarsh, Dempsey, Donald M, Wells, J Michael, Wyatt, Matt, Gordon, Geoff, Liang, Wayne H, Cimino, James
• Format: Journal Article
• Language: English
• Published: United States American Medical Informatics Association 2018
• Subjects: Alabama; Computer Security; Data Anonymization; Guidelines as Topic; Health Facilities; Humans; Phenotype; Precision Medicine; Registries - standards; Software; User-Computer Interface; Alabama
• ISSN: 1559-4076

Precision medicine requires that groups of patients matching clinical or genetic characteristics be identified in a clinical care setting and treated with the appropriate intervention. In the clinical setting, this process is often facilitated by a patient registry. While the software architecture of federated patient registries for research has been well characterized, local registries focused on clinical quality and care have received less attention. Many clinical registries appear to be one-off projects that lack generalizability and the ability to scale to multiple diseases. We evaluate the applicability of existing registry guidelines for registries designed for clinical intervention, propose a software architecture more practical for single-institution clinical registries and report the implementation of a generalizable clinical patient registry architecture at the University of Alabama at Birmingham (UAB).