This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. DESCRIPTION (provided by applicant): 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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| Clowse, Megan E B; Richeson, Rachel L; Pieper, Carl et al. (2013) Pregnancy outcomes among patients with vasculitis. Arthritis Care Res (Hoboken) 65:1370-4 |
| Statland, Jeffrey M; Bundy, Brian N; Wang, Yunxia et al. (2012) A quantitative measure of handgrip myotonia in non-dystrophic myotonia. Muscle Nerve 46:482-9 |
| Richesson, Rachel L; Sutphen, Rebecca; Shereff, Denise et al. (2012) The Rare Diseases Clinical Research Network Contact Registry update: features and functionality. Contemp Clin Trials 33:647-56 |
| Lee, Hye-Seung; Paik, Myunghee Cho; Rundek, Tatjana et al. (2011) Heritability Estimation using Regression Models for Correlation. J Biom Biostat 2: |
| Statland, Jeffrey M; Wang, Yunxia; Richesson, Rachel et al. (2011) An interactive voice response diary for patients with non-dystrophic myotonia. Muscle Nerve 44:30-5 |
| McCormack, Francis X; Inoue, Yoshikazu; Moss, Joel et al. (2011) Efficacy and safety of sirolimus in lymphangioleiomyomatosis. N Engl J Med 364:1595-606 |
| Richesson, Rachel L; Nadkarni, Prakash (2011) Data standards for clinical research data collection forms: current status and challenges. J Am Med Inform Assoc 18:341-6 |
| Tan, Wen-Hann; Bacino, Carlos A; Skinner, Steven A et al. (2011) Angelman syndrome: Mutations influence features in early childhood. Am J Med Genet A 155A:81-90 |
| Richesson, Rachel L; Smith, Susan B; Malloy, Jamie et al. (2010) Achieving standardized medication data in clinical research studies: two approaches and applications for implementing RxNorm. J Med Syst 34:651-7 |
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