This application seeks support to establish a Data and Technology Coordinating Center (DTCC) for the Rare Diseases Clinical Research Network. The DTCC will play an active role in the development of the Network, It will facilitate research in the design of clinical protocols and the data management and analysis necessary to support them. Working with the RD Clinical Centers, the DTCC will make available a coordinated clinical data management system for the collection, storage and analysis of data from multiple diseases and multiple clinical sites. The data management system will be a secure web based system that includes the capability to capture and integrate many different forms of data (clinical, imaging, genetics, pathology, etc.), and the scalability to serve as a national clinical information network. Among its features will be a user-friendly system for recruitment and referral, tools for cross-disease data mining, data sharing and a public portal to relevant data resources. This application applies novel approaches to and technologies for data management and training, includes the use of web-based video streaming and also seeks to conduct research and development of new approaches to distributed computing, federated databases and data mining.
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