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Related Concept Videos

Integrated Healthcare System01:20

Integrated Healthcare System

An integrated healthcare system (IHS) is a set of organizations that provides for or arranges to provide coordinated and continuous service to a defined population. The IHS takes responsibility for that particular population's health status and outcome, both clinically and fiscally. An integrated healthcare system is a well-organized, well-coordinated, and collaborative network. The integrated delivery system is a network that connects different healthcare providers to deliver organized,...
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Related Experiment Video

Updated: May 21, 2026

TBase - an Integrated Electronic Health Record and Research Database for Kidney Transplant Recipients
09:00

TBase - an Integrated Electronic Health Record and Research Database for Kidney Transplant Recipients

Published on: April 13, 2021

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

Marc D Natter1, Justin Quan, David M Ortiz

  • 1Children's Hospital Informatics Program at Harvard-MIT Health Sciences and Technology, Children's Hospital Boston, Boston, MA 02115, USA. marc.natter@childrens.harvard.edu

Journal of the American Medical Informatics Association : JAMIA
|June 27, 2012
PubMed
Summary

A new self-scaling registry technology (i2b2-SSR) enables scalable, collaborative data sharing for multi-site disease registries. This platform minimizes technical barriers while maintaining data control for researchers.

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09:00

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Published on: April 13, 2021

Area of Science:

  • Health Informatics
  • Collaborative Research Technologies
  • Data Management

Background:

  • Disease registries traditionally face challenges with project-specific designs and data control.
  • Centralized data models can hinder collaborative research efforts.
  • A need exists for flexible, scalable solutions for multi-site disease data sharing.

Purpose of the Study:

  • To design and implement a self-scaling registry technology for collaborative data sharing.
  • To leverage existing open-source frameworks (i2b2 and SHRINE) for a federated infrastructure.
  • To enable researchers to maintain data ownership while facilitating permissioned data sharing.

Main Methods:

  • Developed a modular, ontology-based, federated infrastructure using i2b2 and SHRINE.
  • Implemented web services for peer-group overlays, group-aware data aggregation, and administrative functions.
  • Focused on creating a scalable solution for multi-site disease registries.

Main Results:

  • The i2b2 self-scaling registry technology (i2b2-SSR) is now utilized by the 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry.
  • The platform also supports the 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository.
  • The implemented i2b2-SSR infrastructure supports over 6000 subjects across multiple US sites.

Conclusions:

  • The i2b2-SSR platform effectively minimizes technical barriers to collaboration in multi-site research.
  • It provides fine-grained control over data sharing for research investigators.
  • i2b2-SSR establishes a digital infrastructure for community-driven research data sharing, particularly in pediatric rheumatology, with potential for broader interdisciplinary applications.