The Data Management and Coordinating Center (DMCC) is funded by Office of Rare Diseases Research, NCATS to provide a secure, customizable, scalable coordinated clinical data management system for the collection, storage, and analysis of diverse data types from clinical researchers working on many different types of rare diseases.
The DMCC houses all data for the RDCRN centrally via in-house scalable and customizable electronic data capture systems; the DMCC system has collected and stores over 22 million data points. Some of the data systems built by the DMCC for the RDCRN include: internal members' only site with calendar, document navigation, comprehensive member directory with over 2400 Consortium members and 400 institutions, committee structure, multi-tiered security (protocol-based, user-based, consortium-based, folder-based security structures); specimen collection, shipment, and tracking system; pharmacy shipment, inventory, and dispensation system; randomization system; participant management system with electronic case report forms (eCRFs); (online) eligibility voting system; standardized and automated report sets (accrual, demographics, adverse events, compliance, study status) updated no less than monthly; automated XML/CSV data sets with associated data dictionaries; Adverse Event Data Management System (AEDAMS) for real time reporting, submission, review, and distribution of adverse events as they occur; and a Network Contact Registry.
Jeffrey P. Krischer, Ph.D., Principal Investigator, RDCRN
Distinguished Professor, Department of Pediatrics Division of Bioinformatics and Biostatistics
University of South Florida
Jennifer L. Harris, MSPH, CCRP, Assistant Director