Research Horizons


Rare Disease Day: Spotlight on the Data Management and Coordinating Center

Eileen King, PhD, FASA, is co-principal investigator with the Rare Diseases Clinical Research Network’s Data Management and Coordinating Center. King is a professor in the Division of Biostatistics and Epidemiology at Cincinnati Children’s Hospital Medical Center and in the Division of Pediatrics at the University of Cincinnati College of Medicine.

The Rare Diseases Clinical Research Network (RDCRN) is comprised of 20 consortia or research groups, each of which focuses on at least three related rare diseases. During the current (fourth) funding cycle that began summer 2019, each consortium committed to conduct at least three clinical research studies, with one of the studies focusing on understanding the natural history of the rare disease.

A team of experts based at Cincinnati Children’s Hospital Medical Center also joined the RDCRN for this new funding cycle as the network’s new Data Management and Coordinating Center (DMCC). In this role, we facilitate and support the activities of the research consortia along with trans-network activities that enable the advancement of rare disease research.

Our vision as the DMCC is to serve as a trusted partner of the research consortia to increase knowledge, accelerate discovery, and bring new treatment options to trial, pursuing the shared goal of improving the health and wellness of rare disease patients and their families.

Highlights from the center

Our Clinical Research Core reviewed protocols and informed consents for 61 current protocols. We also transferred databases for 30 ongoing studies for 13 consortia and built databases for 16 new studies.

Our Cross Consortia Collaboration Committee is overseeing work to survey patients with rare diseases to understand the impact of COVID-19 on their health and access to services.

Our Data Management Core (DMC) manages a cloud-based, secure data infrastructure that houses numerous data types shared among the consortia, including imaging, genomics, patient-reported outcomes, neurodevelopmental testing data and more.

Our Engagement and Dissemination Core works with more than 130 patient advocacy groups that are actively involved in the network. Engagement includes monthly knowledge sharing meetings, webinars and disseminating research findings.

Read more about the DMCC’s activities

Contact the DMCC:

Read more about how experts at Cincinnati Children’s tackle rare diseases.