An i2b2-based, generalizable, open source, self-scaling chronic disease registry.
An i2b2-based, generalizable, open source, self-scaling chronic disease registry.
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DOI：
10.1136/amiajnl-2012-001042
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发表时间：
2013-01-01
期刊：
影响因子：
--
通讯作者：
Mandl KD
中科院分区：
文献类型：
--
作者：
Natter MD;Quan J;Ortiz DM;Bousvaros A;Ilowite NT;Inman CJ;Marsolo K;McMurry AJ;Sandborg CI;Schanberg LE;Wallace CA;Warren RW;Weber GM;Mandl KD
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. 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. 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. We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. 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.
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影响因子：
2.6
作者：
Platt, Richard;Carnahan, Ryan M.;Weiner, Mark G.
通讯作者：
Weiner, Mark G.
影响因子：
4.7
作者：
Mina, Rina;von Scheven, Emily;Brunner, Hermine I.
通讯作者：
Brunner, Hermine I.
影响因子：
17.7
作者：
Potash, James B.;Toolan, Jennifer;McMahon, Francis J.
通讯作者：
McMahon, Francis J.
DOI：
10.1197/jamia.m2371
发表时间：
2007-07-01
影响因子：
6.4
作者：
McMurry, Andrew J.;Gilbert, Clint A.;Mandl, Kenneth D.
通讯作者：
Mandl, Kenneth D.
影响因子：
4.7
作者：
Huber, Adam M.;Giannini, Edward H.;Bowyer, Suzanne L.;Kim, Susan;Lang, Bianca;Lindsley, Carol B.;Pachman, Lauren M.;Pilkington, Clarissa;Reed, Ann M.;Rennebohm, Robert M.;Rider, Lisa G.;Wallace, Carol A.;Feldman, Brian M.
通讯作者：
Feldman, Brian M.