RARE DISEASES CLINICAL RESEARCH NETWORK
Data Management and Coordinating Center |  |
Facilitating RDCRN operations, research, participant engagement, and data sharing | |
Principal Investigators
Lead Institution:
Cincinnati Children's Hospital Medical Center
Cincinnati Children's Hospital Medical Center
Maurizio Macaluso, MD, DrPH, FACE
Michael Wagner, PhD
About the DMCC
The Data Management and Coordinating Center (DMCC) provides the infrastructure, expertise, and coordination that support RDCRN research, collaboration, participant engagement, and data sharing across the network.
Explore the DMCC's mission, strategic aims, and four cores →
- Refined existing and created new welcome package materials to successfully onboard 15 consortia. This includes the creation of 10 new RDCRN consortia websites.
- Established DMCC-consortium teams with all consortia to facilitate protocol and database development.
- Developed, deployed, and analyzed data from a Clinical Trial Readiness survey created by DMCC co-investigators. The purpose of the survey is to identify cross-cutting needs for DMCC or other coordinated support, such as consultation with the Trial Innovation Network.
- Increased visibility and access to information by creating network-wide protocol and site databases for all consortia sites and protocols.
- Established a collaborative infrastructure to define the structure, roles, and processes for network groups and committees, including the launch of the Early Career Enhancement Collaborative.
- Revised the format of the Coalition of Patient Advocacy Groups (CPAG) networking events to allow for more informal dialogue and engagement with subject matter experts.
- Trained consortia staff of 16 graduated and/or alumni consortia on RDCRN tools, platforms, and website maintenance to ensure a smooth transition after RDCRN performance periods ended.
