dc.contributor.author | Natter, Marc D. | |
dc.contributor.author | Quan, Justin | |
dc.contributor.author | Ortiz, David M. | |
dc.contributor.author | Bousvaros, Athos | |
dc.contributor.author | Ilowite, Norman T. | |
dc.contributor.author | Inman, Christi J. | |
dc.contributor.author | Marsolo, Keith | |
dc.contributor.author | McMurry, Andrew J. | |
dc.contributor.author | Sandborg, Christy I. | |
dc.contributor.author | Schanberg, Laura E. | |
dc.contributor.author | Wallace, Carol A. | |
dc.contributor.author | Warren, Robert W. | |
dc.contributor.author | Weber, Griffin M. | |
dc.contributor.author | Mandl, Kenneth D. | |
dc.date.accessioned | 2012-10-16T14:43:44Z | |
dc.date.available | 2012-10-16T14:43:44Z | |
dc.date.issued | 2012-06 | |
dc.identifier.issn | 1067-5027 | |
dc.identifier.issn | 1527-974X | |
dc.identifier.uri | http://hdl.handle.net/1721.1/74014 | |
dc.description.abstract | 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. | en_US |
dc.language.iso | en_US | |
dc.publisher | BMJ Publishing Group | en_US |
dc.relation.isversionof | http://dx.doi.org/10.1136/amiajnl-2012-001042 | en_US |
dc.rights | Article is made available in accordance with the publisher's policy and may be subject to US copyright law. Please refer to the publisher's site for terms of use. | en_US |
dc.source | BMJ | en_US |
dc.title | An i2b2-based, generalizable, open source, self-scaling chronic disease registry | en_US |
dc.type | Article | en_US |
dc.identifier.citation | Natter, M. D. et al. “An I2b2-based, Generalizable, Open Source, Self-scaling Chronic Disease Registry.” Journal of the American Medical Informatics Association (2012). Copyright © 2012 by the American Medical Informatics Association | en_US |
dc.contributor.department | Harvard University--MIT Division of Health Sciences and Technology | en_US |
dc.contributor.mitauthor | Natter, Marc D. | |
dc.contributor.mitauthor | Ortiz, David M. | |
dc.contributor.mitauthor | Mandl, Kenneth D. | |
dc.relation.journal | Journal of the American Medical Informatics Association | en_US |
dc.eprint.version | Final published version | en_US |
dc.type.uri | http://purl.org/eprint/type/JournalArticle | en_US |
eprint.status | http://purl.org/eprint/status/PeerReviewed | en_US |
dspace.orderedauthors | Natter, M. D.; Quan, J.; Ortiz, D. M.; Bousvaros, A.; Ilowite, N. T.; Inman, C. J.; Marsolo, K.; McMurry, A. J.; Sandborg, C. I.; Schanberg, L. E.; Wallace, C. A.; Warren, R. W.; Weber, G. M.; Mandl, K. D. | en |
mit.license | PUBLISHER_POLICY | en_US |
mit.metadata.status | Complete | |