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

作者：Natter Marc D^*; Quan Justin; Ortiz David M; Bousvaros Athos; Ilowite Norman T; Inman Christi J; Marsolo Keith; McMurry Andrew J; Sandborg Christy I; Schanberg Laura E; Wallace Carol A; Warren Robert W; Weber Griffin M; Mandl Kenneth D

来源：Journal of the American Medical Informatics Association, 2013, 20(1): 172-179.

DOI：10.1136/amiajnl-2012-001042

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 %26 the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. %26lt;br%26gt;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. %26lt;br%26gt;Results The 56-site Childhood Arthritis %26 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 %26gt;6000 subjects at sites throughout the USA. %26lt;br%26gt;Discussion We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. %26lt;br%26gt;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.

• 出版日期2013-1