Rare Diseases Clinical Research Network

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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 Division of Rare Diseases Research Innovation (DRDRI). 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.

Contents

Established by Congress under the Rare Diseases Act in 2002, [1] the RDCRN has included more than 350 sites in the United States and more than 50 in 22 other countries. To date, they have encompassed hundreds of research protocols and included more than 56,000 participants in studies ranging from immune system disorders and rare cancers to heart and lung disorders, brain development diseases, and more. [2]

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)

RDCRN Contact Registry

The RDCRN Contact Registry [9] [10] is a patient contact registry sponsored by the National Institutes of Health (NIH). The RDCRN Contact Registry collects and stores the contact information of people who want to participate in RDCRN-sponsored research or learn more about RDCRN research. It connects patients with researchers in order to advance rare diseases research. Future research may produce helpful information for those with rare diseases.

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References

  1. ↑ "Rare Disease Act of 2002" (PDF).
  2. ↑ "NIH funding bolsters rare diseases research collaborations". National Center for Advancing Translational Sciences. 2019-10-02. Retrieved 2019-11-25.
  3. ↑ "RFA-RR-03-008: RARE DISEASES CLINICAL RESEARCH NETWORK" . Retrieved 8 February 2012.
  4. ↑ "NIH Establishes Rare Diseases Clinical Research Network". November 3, 2003. Archived from the original on 27 October 2004. Retrieved February 8, 2012.
  5. ↑ "RFA-OD-08-001: Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network" . Retrieved February 8, 2012.
  6. ↑ "NIH Announces Expansion of Rare Diseases Clinical Research Network". October 5, 2009. Retrieved February 8, 2012.
  7. ↑ "NIH funds research consortia to study more than 200 rare diseases". National Institutes of Health. October 8, 2014. Retrieved December 18, 2015.
  8. ↑ "NIH funding bolsters rare diseases research collaborations". National Center for Advancing Translational Sciences. 2019-10-02. Retrieved 2019-11-25.
  9. ↑ "RDCRN Launches Contact Registry to Connect Patients, Researchers and Advance Rare Disease Research". Rare Diseases Clinical Research Network. Retrieved 2022-03-15.
  10. ↑ "RDCRN Contact Registry". Rare Diseases Clinical Research Network. Retrieved 2022-03-15.
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