Rare Diseases Clinical Research Network

The Rare Diseases Clinical Research Network (RDCRN) an initiative of the Office of Rare Diseases Research, RDCRN is funded by the ORDR, the National Center for Advancing Translational Sciences and collaborating institute centers. The RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

As of October 2014, the network is composed of around 2,600 researchers which includes National Institutes of Health staff, academic investigators and members of 98 patient advocacy groups. There are 91 studies underway.[1]

History

The following is a timeline of the Rare Diseases Clinical Research Network:

  • Rare Disease Clinical Research Center for New Therapies and New Diagnostics, Principal Investigator: Dr. Arthur L. Beaudet (Baylor College of Medicine, Houston, TX)
  • Vasculitis Clinical Research Network, Principal Investigator: Dr. Peter A. Merkel (University Pennsylvania, Philadelphia, PA)
  • Rare Lung Diseases Consortium, Principal Investigator: Dr. Bruce C. Trapnell (Children's Hospital Medical Center, Cincinnati, OH)
  • Rare Diseases Clinical Research Center for Urea Cycle Disorders, Principal Investigator: Dr. Mark L. Batshaw (Children's National Medical Center, Washington, DC)
  • Bone Marrow Failure Clinical Research Center, Principal Investigator: Dr. Jaroslaw P. Maciejewski (The Cleveland Clinic Foundation, Cleveland, OH)
  • Nervous System Channelopathies Pathogenesis and Treatment, Principal Investigator: Dr. Robert C. Griggs (University of Rochester, Rochester, NY)
  • The Natural History of Rare Genetic Steroid Disorders, Principal Investigator: Dr. Maria New (Weill Medical College of Cornell University, New York, NY)
  • The Data and Technology Coordinating Center, Principal Investigator: Dr. Jeffrey P. Krischer (H. Lee Moffitt Cancer Center and Research Institute, University of South Florida, Tampa, FL)

Rare Disease Clinical Research Consortia

The Rare Diseases Clinical Research Network consists of 22 Rare Diseases Clinical Research Centers (RDCRCs) and a Data Management and Coordinating Center (DMCC).

The RDCRCs, the DMCC, and their Principal Investigators are located at the following institutions:

Data Management and Coordinating Center (DMCC)

The RDCRN’s Data Management and Coordinating Center (DMCC) is hosted by the Health Informatics Institute at the University of South Florida in Tampa, FL. The DMCC supports RDCRN consortia by providing "data management and analysis infrastructure; logistical and administrative assistance; and data coordination, management, and sharing."[6]

The RDCRN also provides user-friendly web-based recruitment and referral tools, including the RDCRN Contact Registry. The RDCRN Contact Registry aims to provide up-to-date information for patients and assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities.

References

External links

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