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- Title
(IIS01) North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) Model for Implementing OpenClinica Insight for Data Sharing and Visualization.
- Authors
Gilbertson, Peter; Wallace, Trent; Rogers, Lydia; McCurdy Murphy, Sara; Patton, Lisa; Chrisant, Sarah; David Li; Halper, June; Rammohan, Kottil
- Abstract
Background: The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) is a clinic-based longitudinal registry of sites located in the United States and Canada. Active since 2015, the registry is a public-private partnership aiming to improve multiple sclerosis (MS) care and understanding as a database of clinical records and patient-centered outcomes. With enrollment, yearly follow-up and exacerbation-based visits, patients provide demographic, medical history, attack history, and health productivity information supplemented with physician-collected physical and cognitive assessments. In just a few years the registry has generated several hundred thousand points of data on a wide variety of health-related topics from the current 22 participating sites. The registry includes data from standardized interviews and physician evaluations and is adding self-administered patient-reported outcomes in the coming months. Objectives: To develop a model to share aggregated data from individual sites to enable participating sites and industry partners the ability to view and analyze larger, multisite datasets for research and exploration. Methods: OpenClinica is an open-source and software-as-a-service electronic data collection (EDC) system most often used for data collection and data management in a clinical setting. OpenClinica Insight, built on the open-source Metabase platform, is a data reporting and sharing tool available as part of OpenClinica's Enterprise system that connects directly to the EDC database and allows realtime data access, visualization, and downloading. To implement Insight, the team coordinated with project leadership, industry, and cooperating investigators to develop a process for defining roles and relationships, defining appropriate summary charts and graphs to summarize collected data, and defining data access parameters and restrictions. Results: OpenClinica Insight provides a platform to leverage limited standardized patient-derived data on a prospective basis. The platform is useful and end-user friendly and allows for efficient information sharing across the pool of geographically diverse clinical research sites to provide insights into local, regional, and continental patterns and standards of MS care. Conclusions: OpenClinica Insight is a powerful tool to report information from OpenClinica Enterprise, and the model developed from NARCRMS should serve as an example for integrating informatics from large databases developed to study natural history of various chronic disorders such as MS.
- Publication
International Journal of MS Care, 2020, Vol 22, Issue S2, p46
- ISSN
1537-2073
- Publication type
Academic Journal