Data Management and Coordinating Center
The DMCC at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati is funded by the DRDRI at NCATS to facilitate Network operations, research, participant engagement, and data sharing. Specifically, the DMCC:
- Advances the methods and the practice of rare disease research across the Network and to the broader rare disease community
- Develops and maintains a leading-edge, shared Commons encompassing data and best practices generated by RDCRN sites, Consortia, and community stakeholders
- Establishes the RDCRN as a globally connected resource for improving rare disease research across the entire rare disease ecosystem
- Promotes collaboration and research study readiness, engages patients and families, and creates an “Esprit de Corps” for the RDCRN, through the adoption of Learning System principles
The Four Cores of the DMCC
The DMCC is comprised of four Cores, each with distinct attributes and services that it provides to Network participants:
Data Management Core
- Management system for collection, storage, and quality control of Network-derived research data
- A web-based platform that allows for real-time tracking of data quality and completeness and that facilitates remote monitoring
- A portal and tools for research scientists and clinicians to access and manage their own data
- A portal and tools to share information both within and outside of the RDCRN in a manner that meets all local, federal, and international human subjects protection, data safety and data sharing requirements
- Cloud computing services and engineering support for facilitating computing and data services across the Network and to the broader research community
Clinical Research Core
- Protocol development and management support and consultation
- Biostatistics and study design support and consultation
- Support in establishing single IRBs
- Information and guidance for RDCRN members on trans-RDCRN rare disease research issues such as working with industry or navigating the regulatory process
- Coordination of training issues that cut across topics relevant to multiple RDCRC sites for RDCRN trainees
Engagement and Dissemination Core
- A broad RDCRN outreach plan for the Network that extends to basic and clinical researchers, academic and practicing physicians, patients, and the general public
- An internet-based web-portal to serve as a central access point to information generated by the RDCRCs
Administrative Core
- Overall coordination for the RDCRN and management of RDCRN activities, including steering committee meetings
- Oversight and coordination of all DMCC Cores
- Support for Coalition of Patient Advocacy Group meetings
- Preparation of the annual report for the External Scientific Panel
Eileen King, PhD
Principal Investigator
Professor, Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center
Professor, Department of Pediatrics, University of Cincinnati College of Medicine
Maurizio Macaluso, MD, DrPH, FACE
Co-Principal Investigator
Director, Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center
Professor, Department of Pediatrics, University of Cincinnati College of Medicine
Michael Wagner, PhD
Co-Principal Investigator
Associate Professor, Division of Biomedical Informatics, Cincinnati Children’s Hospital Medical Center
Associate Professor, Department of Pediatrics, University of Cincinnati College of Medicine