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Chapter 6: Resources and Networking for Sharing Data

Scientific advances increasingly rely on large collaborations that require sharing of data, resources and expertise among disparate institutions. For data to be most useful, it must be linked in a way that can be easily accessed, processed by computers, and formatted so that people can understand and use the information effectively. Informatics systems not only help make this possible, they also can connect researchers to one another and provide them with the data and resources they need to accelerate the pace of medical research.

The CTSA Consortium supports the development of informatics tools to encourage and facilitate research in a way that is useful and accessible to all. CTSA-funded institutions have embraced this technology and are harnessing its power to improve research through enhanced collaborations and improved data sharing.

Enabling Key Connections

CTSA-supported multidisciplinary teams are developing and implementing new informatics tools to help researchers and institutions collaborate. These tools are linking researchers with patient communities, industry partners and others within their universities in order to more quickly turn scientific discovery into beneficial treatments for patients. Examples are included below:

  • Enhancing research connections via Harvard Catalyst Profiles
    Profiles Research Networking Software (RNS) is an open-source, expertise-mining and collaboration tool based on the VIVO Semantic Web ontology and developed by Harvard Catalyst: the Harvard Clinical and Translational Science Center. Profiles RNS is unique in its ability to automatically discover connections, such as people who have similar interests or whose offices are physically close, and to analyze and display this information. Harvard uses Profiles RNS to help investigators form cross-institutional collaborations for pilot projects, make recommendations to multidisciplinary teams to apply for funding opportunities, match students with mentors, and study diversity in the biomedical workforce. several CTSA institutions across the country have adopted Profiles RNS, and it is part of the Direct2Experts and VIVO national expertise networks. Learn more at http://profiles.catalyst.harvard.edu.
  • Building research networks at the University of California, San Francisco
    A similar informatics tool at the University of California, San Francisco, enables researchers there to find experts in various disease fields and to connect with other researchers, mentors, community or industry partners. UCSF Profiles can search for presentations, share mentoring capabilities, and enable campus administrators to easily build contact lists of targeted groups of experts. The team is working with partners to develop a library of research applications that can be shared. UCSF also is extending this tool to integrate with other applications to enable researchers to connect and share information in real-time across web, desktop and mobile channels. To learn more, visit http://profiles.ucsf.edu.

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Facilitating Research through Data Management

Effectively managing large amounts of clinical research data can be difficult without appropriate support. Most academic medical centers have or are developing clinical data repositories that can be used with appropriate privacy and confidentiality protections for research. In addition, physicians increasingly need to access large data sets via mobile devices or laptops in remote areas. Effective tools to manage these needs are vital. Following are two examples of CTSA-supported tools:

  • REDCap: Capturing data for clinical trials
    Investigators at CTSA institutions are benefitting from broad adoption of Research Electronic Data Capture. REDCap is an easy-to-use, freely available tool for clinical study management and data capture. Originally designed to support data capture for research studies, this CTSA-funded secure Web application now has been expanded to provide investigators with the ability to create standardized surveys, easily transfer data, and export data into a variety of statistical programs. With these new features, users can quickly and securely build and manage online surveys and databases. More than 250 institutions are using REDCap to support approximately 20,000 studies spanning numerous research focus areas. Additionally, the entire REDCap program has been translated into multiple languages and is in use worldwide. Learn more at www.project-redcap.org.
  • CTSA-IP: Sharing technology and enhancing industry partnerships
    Intended to encourage research collaborations and private partnerships, CTSA-IP is a Web-based intellectual property search engine that aggregates and promotes technologies from CTSA institutions and NIH. Originally designed as a way to collect licensing and technology transfer information at a single site, CTSA-IP is now much broader and features interactive elements that provide users with technology-specific alerts. The Rochester Clinical and Translational Science Institute built the original CTSA-IP database with input from the CTSA Consortium to expand the tool. It continues to evolve as a collaboration tool, linking to other platforms and initiatives. For example, investigators using CTSA-IP can connect with even more organizations to collaborate and license their work through an agreement with the iBridge Network, a program of the nonprofit Kauffman Innovation Network, Inc. Visit www.ctsaip.org for more information.

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Showcasing the Science

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