An i2b2-based, generalizable, open source, self-scaling chronic disease registry

• Main Authors: Natter, Marc D. (Contributor), Quan, Justin (Author), Ortiz, David M. (Contributor), Bousvaros, Athos (Author), Ilowite, Norman T. (Author), Inman, Christi J. (Author), Marsolo, Keith (Author), McMurry, Andrew J. (Author), Sandborg, Christy I. (Author), Schanberg, Laura E. (Author), Wallace, Carol A. (Author), Warren, Robert W. (Author), Weber, Griffin M. (Author), Mandl, Kenneth D. (Contributor)
• Other Authors: Harvard University- (Contributor)
• Format: Article
• Language: English
• Published: BMJ Publishing Group, 2012-10-16T14:43:44Z.
• Subjects: Article
• Online Access: Get fulltext

 Objective: Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. Materials: and methods Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions. Results: The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. Discussion: We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. Conclusions: The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases.