In the RDCRN's first phase, the network's Data and Technology Coordinating Center (DTCC) developed a management system for the collection, storage, and analysis of RDCRC data, and additional systems to address needs of individual studies, such as a laboratory data collection system, a specimen tracking system, and a pharmacy management system (to support blinded distribution of study agents and placebos). The DTCC also created RDCRN's central public Web site, developed as a portal for the rare diseases community, including patients and their families and health care professionals, to provide information on rare disease research, consortium activities, RDCRN-approved protocols, disease information, and practice guidelines. Located at , the Web site had over 3.4 million visits in 2008. The RDCRN DTCC also developed a unique voluntary patient registry that provides ongoing contact with approximately 5,000 individuals from over 60 countries representing 42 diseases, alerting them when new studies are opened in the network or when ongoing studies expand to new sites.

In this second phase of the RDCRN, the University of South Florida will continue these data management efforts, under a new name and with a slightly different charge, as the Data Management Coordinating Center (DMCC). The DMCC will develop uniform investigative clinical research protocols for data collection in collaboration with the RDCRN Steering Committee, monitor protocol adherence, data collection and data submission, and work with the each consortium's Data and Safety Monitoring Boards to establish protocols for adverse events notification and reporting.

"This innovative program provides unique insights into the development of rare diseases as well as therapeutic opportunities," according to Story C. Landis, Ph.D. director of the NINDS. "The NINDS is proud to administer the RDCRN data management coordinating center on behalf of the NIH."

Source: NIH/National Institutes of Health, Office of Disease Prevention