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 Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovationh (DRDI). GLIA-CTN is funded under grant number U54NS115052 as a collaboration between NCATS and the National Institute of Neurological Disorders and Stroke (NINDS). All RDCRN consortia are supported by the network’s Data Management and Coordinating Center (DMCC) (U2CTR002818). Funding support for the DMCC is provided by NCATS and NINDS. The content of this website is solely the responsibility of the GLIA-CTN administrative coordinating center at Children’s Hospital of Philadelphia and does not necessarily represent the official views of the NIH.
