- 1 Clinical Integrated Data Repositories
- 2 various models of IDRs
- 3 Links to Integrated Data Repositories, (Predominantly i2b2 at Academic Medical Centers)
- 4 Technologies and Companies active in the Integrated Data Repository community
- 5 Other Organizations, underlying Technology links, and helpful hints
- 6 Value of IDRs
- 7 Detailed description of individual repositories
- 8 References
Clinical Integrated Data Repositories
This page will be used to present materials on Integrated Data Repositories used for Clinical and Translational Research. This is a public facing home for the activities of the Integrated Data Repositories Affinity Group which was started as part of the National Institutes of Health Clinical and Translational Science Awards Informatics Key Function Committee. As a result, this section is less a wikipedia page and more a space to promote cross linkages and sharing.
Group Description: The Data Repositories Affinity Group provides a forum for collaboration and facilitation of the process of building and enhancing Integrated Data Repositories (IDRs) for Biomedical Research. We define an Integrated Data Repository, ultimately, as a large-scale database containing data from the full array of systems in a biomedical enterprise -- including clinical systems, life sciences (genomics / proteomics), research, billing, registries, clinical trial systems, and more. Most data repositories begin with some mix of these data resources and continue to grow in complexity and sources over time. The purpose of an IDR is to support a wide range of activities within a biomedical research enterprise, including but not limited to hypothesis testing, cohort development, comparative effectiveness, development of quality measures, genome / phenome matching, genome-wide association studies (GWAS), and general population based studies.
Our members include institutions that are in the early stages of repository development as well as many institutions that have already built data repositories and are seeking to enhance them. We conduct monthly conference calls and maintain a listserve for group use. For more information on how to join in the calls and listserv, visit: CTSA Central or email CTSA_Informatics@CTSAC4.org
Have ideas or thoughts you want to share about this wiki and IDRs? Give us your feedback: CTSA IDR Goals Survey
various models of IDRs
Links to Integrated Data Repositories, (Predominantly i2b2 at Academic Medical Centers)
Harvard University Including Beth Israel Deaconness Medical Center, Brigham and Women's Hospital, Children's Hospital Boston, Dana Farber Cancer Center, Joslin Diabetes Center, Massachusetts General Hospital. Mainly i2b2 installations with SHRINE integrating data across each hospital
Medical College of Wisconsin i2b2 Cohort Discovery Tool. Self-service way to query the Clinical and Translational Research Informatics Data Warehouse.
University of Cincinnati (including Cinncinati Children's Hospital Medical Center) Well established i2b2 install and advancing the use of IDRs to support registries.
HERON at the University of Kansas Medical Center i2b2 running on Linux and Oracle. Extensive documentation of their development process and open source access to their ETL code.
Technologies and Companies active in the Integrated Data Repository community
Value of IDRs
Building IDRs often represents signficant initial investment and maintenance costs. To show the value, a list of studies showing research findings that would not be found without IDRs can be used. IDRPublicationList
Detailed description of individual repositories
BTRIS (NIH Clinical Center)
- Huser V, Deshmukh V, Wilcox A, Lowe H, Going Beyond Cohort Discovery: Current Limitations, Advanced Methodologies and Future Trends, AMIA Clinical Research Informatics Summit, 2012 http://proceedings.amia.org/231l0v/1
- Deshmukh VG, Meystre SM, Mitchell JA. Evaluating the informatics for integrating biology and the bedside system for clinical research. BMC Med Res Methodol. 2009;9:70.
- Mackenzie SL, Wyatt MC, Schuff R, Tenenbaum JD, Anderson N. Practices and perspectives on building integrated data repositories: results from a 2010 CTSA survey. J Am Med Inform Assoc. 2012 Jun 1;19(e1):e119-e24.