The Rare Diseases Clinical Research Network (RDCRN) is pleased to announce the 2021 leadership slate for its Network Steering Committee, which oversees governance and decision making for trans-network policies and procedures.
The RDCRN is a network of 20 individual clinical research consortia and a Data Management and Coordinating Center (DMCC) funded by the National Institutes of Health and led by the National Center for Advancing Translational Sciences (NCATS). The network advances medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing.
The Network Steering Committee includes the principal investigators of the 20 research consortia, leadership of the Coalition of Patient Advocacy Groups (CPAG) and the DMCC, and the program officer based in the NCATS Office of Rare Diseases Research (ORDR).
Incoming Network Steering Committee Chair
- Jennifer Puck, MD
- Professor, University of California, San Francisco Department of Pediatrics
- Principal Investigator, Primary Immune Deficiency Treatment Consortium
Incoming Network Steering Committee Co-Chair
- Andrea Gropman, MD
- Division Chief, Neurodevelopmental Pediatrics and Neurogenetics, Children’s National Medical Center
- Principal Investigator, Urea Cycle Disorders Consortium
Incoming Network Steering Committee Second Co-Chair
- Marc Rothenberg, MD, PhD
- Director, Division of Allergy and Immunology, Cincinnati Children’s Hospital Medical Center
- Principal Investigator, Consortium of Eosinophilic Gastrointestinal Disease Researchers
Outgoing Network Steering Committee Chair
The network also thanks its outgoing Steering Committee Chair, whose leadership guided the network through the first year of the new five-year funding cycle:
- Hyder A. (Buz) Jinnah, MD, PhD
- Professor, Department of Neurology, Emory University School of Medicine
- Principal Investigator, Dystonia Coalition
The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). Now in its fourth five-year funding cycle, RDCRN is a partnership with funding and programmatic support provided by Institutes, Centers, and Offices across NIH, including the National Institute of Neurological Disorders and Stroke, the National Institute of Allergy and Infectious Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Heart, Lung, and Blood Institute, the National Institute of Dental and Craniofacial Research, the National Institute of Mental Health, and the Office of Dietary Supplements.