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dc.contributor.authorNatter, Marc Den_US
dc.contributor.authorQuan, Justinen_US
dc.contributor.authorOrtiz, David Men_US
dc.contributor.authorBousvaros, Athosen_US
dc.contributor.authorIlowite, Norman Ten_US
dc.contributor.authorInman, Christi Jen_US
dc.contributor.authorMarsolo, Keithen_US
dc.contributor.authorMcMurry, Andrew Jen_US
dc.contributor.authorSandborg, Christy Ien_US
dc.contributor.authorSchanberg, Laura Een_US
dc.contributor.authorWallace, Carol Aen_US
dc.contributor.authorWarren, Robert Wen_US
dc.contributor.authorWeber, Griffin Men_US
dc.contributor.authorMandl, Kenneth Den_US
dc.date.accessioned2014-03-11T10:17:39Z
dc.date.issued2012en_US
dc.identifier.citationNatter, M. D., J. Quan, D. M. Ortiz, A. Bousvaros, N. T. Ilowite, C. J. Inman, K. Marsolo, et al. 2012. “An i2b2-based, generalizable, open source, self-scaling chronic disease registry.” Journal of the American Medical Informatics Association : JAMIA 20 (1): 172-179. doi:10.1136/amiajnl-2012-001042. http://dx.doi.org/10.1136/amiajnl-2012-001042.en
dc.identifier.issn1067-5027en
dc.identifier.urihttp://nrs.harvard.edu/urn-3:HUL.InstRepos:11879405
dc.description.abstractObjective: 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
dc.language.isoen_USen
dc.publisherBMJ Groupen
dc.relation.isversionofdoi:10.1136/amiajnl-2012-001042en
dc.relation.hasversionhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3555330/pdf/en
dash.licenseLAAen_US
dc.subjectRegistriesen
dc.subjectinformation disseminationen
dc.subjectinformation storage and retrievalen
dc.subjecthealth services researchen
dc.subjectrheumatic diseasesen
dc.subjectinformaticsen
dc.subjectregistryen
dc.subjectpediatric rheumatologyen
dc.subjectmedical informaticsen
dc.subjectdisease association and predictionen
dc.subjectnatural language processingen
dc.subjectmulti-site disease studiesen
dc.subjectpediatricen
dc.subjectmonitoring the health of populationsen
dc.subjectpersonal health records and self-care systemsen
dc.titleAn i2b2-based, generalizable, open source, self-scaling chronic disease registryen
dc.typeJournal Articleen_US
dc.description.versionVersion of Recorden
dc.relation.journalJournal of the American Medical Informatics Association : JAMIAen
dash.depositing.authorWeber, Griffin Men_US
dc.date.available2014-03-11T10:17:39Z
dc.identifier.doi10.1136/amiajnl-2012-001042*
dash.authorsorderedfalse
dash.contributor.affiliatedWeber, Griffin
dash.contributor.affiliatedMandl, Kenneth


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