About the RDCRN

Data Management and Coordinating Center (DMCC)

Pediatric Epidemiology Center at the University of South Florida

Housed at the University of South Florida in Tampa, FL, the Data Management and Coordinating Center (DMCC) for the Rare Diseases Clinical Research Network (RDCRN) was the coordinating center for the Rare Diseases Clinical Research Network during the previous grant cycle (2003-09) and will continue for the next. The DMCC main objective is to work collaboratively with the Rare Diseases Clinical Research Consortia (RDCRC) to facilitate clinical research in rare diseases.

The Center will support the Consortia by supplying a data management and analysis infrastructure; user-friendly resources for the public and web-based recruitment and referral tools; logistical and administrative assistance; and, data coordination, management and sharing. Additionally, the following are DMCC objectives:

  • Provide a scalable, coordinated, clinical data management system for collection, storage, and analysis of data of RDCRCs. This is achieved through web-based solutions that can be specialized for each consortium and studies within the consortium. System functionalities include treatment assignment, pharmacy management, event scheduler, specimen management, adverse event data management system, and image uploading system.

  • Provide support for a comprehensive and integrated approach to data collection, storage and management, and the integration of clinical data with other unique data, including genetic, imaging, pathologic, and laboratory data.

  • Provide a portal and tools for integration of developed and publicly available datasets for cross-disease data mining at RDCRCs. These portal and tools are implemented using Network approved data standards through the use of select browsers, search tools and interfaces.

  • Provide web based recruitment and referral tools, including the Contact Registry.

  • Provide a user friendly resource site for the public, research scientists, and clinicians. The RDCRN Public Web site contains Network and Consortium specific information, and is an important source of information for the various rare diseases studied under the RDCRN.

  • Provide administrative support to the Network in the form of producing and maintaining all Network documents, including Network Operating Policy and Procedures manuals; and "listserv" interactive email system for communication within the Network.

  • Monitor Network protocol adherence, data collection and data submission, and report violations to the Steering Committee as well as other required entities; and conduct site visits.

Key Personnel

Jeffrey P. Krischer, Ph.D., Principal Investigator, RDCRN
Professor, Department of Pediatrics Division of Bioinformatics and Biostatistics
University of South Florida
E-mail: Jeffrey.Krischer@epi.usf.edu

Kathleen J. Paulus, CIP, Director, Data Management and Regulatory Affairs
E-mail: Kate.Paulus@epi.usf.edu

Jennifer L. Harris, MSPH, CCRP, Assistant Director
E-mail: Jennifer.Harris@epi.usf.edu

Kenneth G. Young II, BS, IASA, Applications Project Manager
Area of expertise: Application Architecture, IVR Speech Engine, Adverse Event System, Application Business Logic, Security, Contact Registry
E-mail: Kenneth.Young@epi.usf.edu

Heather Guillette, MS, Applications Project Manager
Area of expertise: Electronic case report form implementation, Adverse Event System, lab/specimen system, pharmacy system, IVR system
E-mail: Heather.Guillette@epi.usf.edu

Jennifer Lloyd, Coordinator, Marketing and Communications
Area of expertise: Direction and implementation of all public branding and communications for the RDCRN, including web site, logo, electronic mail, print publications, and general marketing
E-mail: Jennifer.Lloyd@epi.usf.edu

 

RDCRN Main Fax: (813) 910-5997