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

Publication ,  Journal Article
Natter, MD; Quan, J; Ortiz, DM; Bousvaros, A; Ilowite, NT; Inman, CJ; Marsolo, K; McMurry, AJ; Sandborg, CI; Schanberg, LE; Wallace, CA ...
Published in: J Am Med Inform Assoc
January 1, 2013

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.

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Published In

J Am Med Inform Assoc

DOI

EISSN

1527-974X

Publication Date

January 1, 2013

Volume

20

Issue

1

Start / End Page

172 / 179

Location

England

Related Subject Headings

  • User-Computer Interface
  • United States
  • Software Design
  • Registries
  • Medical Informatics
  • Internet
  • Information Systems
  • Information Storage and Retrieval
  • Information Dissemination
  • Inflammatory Bowel Diseases
 

Citation

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Chicago
ICMJE
MLA
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Natter, M. D., Quan, J., Ortiz, D. M., Bousvaros, A., Ilowite, N. T., Inman, C. J., … Mandl, K. D. (2013). An i2b2-based, generalizable, open source, self-scaling chronic disease registry. J Am Med Inform Assoc, 20(1), 172–179. https://doi.org/10.1136/amiajnl-2012-001042
Natter, Marc D., Justin Quan, David M. Ortiz, Athos Bousvaros, Norman T. Ilowite, Christi J. Inman, Keith Marsolo, et al. “An i2b2-based, generalizable, open source, self-scaling chronic disease registry.J Am Med Inform Assoc 20, no. 1 (January 1, 2013): 172–79. https://doi.org/10.1136/amiajnl-2012-001042.
Natter MD, Quan J, Ortiz DM, Bousvaros A, Ilowite NT, Inman CJ, et al. An i2b2-based, generalizable, open source, self-scaling chronic disease registry. J Am Med Inform Assoc. 2013 Jan 1;20(1):172–9.
Natter, Marc D., et al. “An i2b2-based, generalizable, open source, self-scaling chronic disease registry.J Am Med Inform Assoc, vol. 20, no. 1, Jan. 2013, pp. 172–79. Pubmed, doi:10.1136/amiajnl-2012-001042.
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. An i2b2-based, generalizable, open source, self-scaling chronic disease registry. J Am Med Inform Assoc. 2013 Jan 1;20(1):172–179.
Journal cover image

Published In

J Am Med Inform Assoc

DOI

EISSN

1527-974X

Publication Date

January 1, 2013

Volume

20

Issue

1

Start / End Page

172 / 179

Location

England

Related Subject Headings

  • User-Computer Interface
  • United States
  • Software Design
  • Registries
  • Medical Informatics
  • Internet
  • Information Systems
  • Information Storage and Retrieval
  • Information Dissemination
  • Inflammatory Bowel Diseases