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.
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]
The following is a timeline of the Rare Diseases Clinical Research Network:
As a result of the Rare Diseases Act of 2002, on February 27, 2003, the ORDR (in conjunction with the National Center for Research Resources (NCRR), the General Clinical Research Consortium (GCRC) Program, and other NIH Institutes) requested applications for a Rare Diseases Clinical Research Network.[3]
On November 3, 2003, the NIH established the Rare Diseases Clinical Research Network with a Data Technology Coordinating Center and the first Rare Disease Clinical Research Consortia (RDCRCs).[4] The founding members of the RDCRN were:
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)
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)
On February 8, 2009, the ORDR partnered with 10 other NIH Institutes to release two requests for resubmissions for the RDCRN.[5]
On October 8, 2014, the NIH announced additional funding of $29 million.[7]
On October 3, 2019, the NIH announced funding of $38 million for 20 rare diseases clinical research consortia and a new Data Management and Coordinating Center through the National Center for Advancing Translational Science's Office of Rare Diseases Research, along with the National Institute of Allergy and Infectious Diseases, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, the National Heart, Lung, and Blood Institute, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Dental and Craniofacial Research, the National Institute of Mental Health and the Office of Dietary Supplements.[8]
RDCRN Contact Registryedit
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.
^"NIH funding bolsters rare diseases research collaborations". National Center for Advancing Translational Sciences. 2019-10-02. Retrieved 2019-11-25.
^"RFA-RR-03-008: RARE DISEASES CLINICAL RESEARCH NETWORK". Retrieved 8 February 2012.
^. November 3, 2003. Archived from the original on 27 October 2004. Retrieved February 8, 2012.
^"RFA-OD-08-001: Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network". Retrieved February 8, 2012.
^"NIH Announces Expansion of Rare Diseases Clinical Research Network". October 5, 2009. Retrieved February 8, 2012.
^"NIH funds research consortia to study more than 200 rare diseases". National Institutes of Health. October 8, 2014. Retrieved December 18, 2015.
^"NIH funding bolsters rare diseases research collaborations". National Center for Advancing Translational Sciences. 2019-10-02. Retrieved 2019-11-25.
^"RDCRN Launches Contact Registry to Connect Patients, Researchers and Advance Rare Disease Research". Rare Diseases Clinical Research Network. Retrieved 2022-03-15.
^"RDCRN Contact Registry". Rare Diseases Clinical Research Network. Retrieved 2022-03-15.
External linksedit
Rare Diseases Clinical Research Network (RDCRN)
NIH Office of Rare Diseases Research (ORDR)
RDCRN Contact Registry
January 01, 1970
rare, diseases, clinical, research, network, this, article, external, links, follow, wikipedia, policies, guidelines, please, improve, this, article, removing, excessive, inappropriate, external, links, converting, useful, links, where, appropriate, into, foot. This article s use of external links may not follow Wikipedia s policies or guidelines Please improve this article by removing excessive or inappropriate external links and converting useful links where appropriate into footnote references September 2022 Learn how and when to remove this message 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 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 Contents 1 History 2 RDCRN Contact Registry 3 References 4 External linksHistory editThe following is a timeline of the Rare Diseases Clinical Research Network As a result of the Rare Diseases Act of 2002 on February 27 2003 the ORDR in conjunction with the National Center for Research Resources NCRR the General Clinical Research Consortium GCRC Program and other NIH Institutes requested applications for a Rare Diseases Clinical Research Network 3 On November 3 2003 the NIH established the Rare Diseases Clinical Research Network with a Data Technology Coordinating Center and the first Rare Disease Clinical Research Consortia RDCRCs 4 The founding members of the RDCRN were 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 On February 8 2009 the ORDR partnered with 10 other NIH Institutes to release two requests for resubmissions for the RDCRN 5 On October 5 2009 the NIH announced funding for 19 rare disease clinical research consortia and a Data Management Coordinating Center through the ORDR along with the National Institute of Neurological Disorders and Stroke NINDS the Eunice Kennedy Shriver National Institute of Child Health and Human Development NICHD the National Heart Lung and Blood Institute NHLBI the National Institute of Diabetes and Digestive and Kidney Diseases NIDDK the National Institute of Allergy and Infectious Diseases NIAID the National Institute of Dental and Craniofacial Research NIDCR and the National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS 6 On October 8 2014 the NIH announced additional funding of 29 million 7 On October 3 2019 the NIH announced funding of 38 million for 20 rare diseases clinical research consortia and a new Data Management and Coordinating Center through the National Center for Advancing Translational Science s Office of Rare Diseases Research along with the National Institute of Allergy and Infectious Diseases the Eunice Kennedy Shriver National Institute of Child Health and Human Development the National Institute of Neurological Disorders and Stroke the National Heart Lung and Blood Institute the National Institute of Arthritis and Musculoskeletal and Skin Diseases the National Institute of Diabetes and Digestive and Kidney Diseases the National Institute of Dental and Craniofacial Research the National Institute of Mental Health and the Office of Dietary Supplements 8 RDCRN Contact Registry editThe 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 References edit Rare Disease Act of 2002 PDF NIH funding bolsters rare diseases research collaborations National Center for Advancing Translational Sciences 2019 10 02 Retrieved 2019 11 25 RFA RR 03 008 RARE DISEASES CLINICAL RESEARCH NETWORK Retrieved 8 February 2012 NIH Establishes Rare Diseases Clinical Research Network November 3 2003 Archived from the original on 27 October 2004 Retrieved February 8 2012 RFA OD 08 001 Rare Diseases Clinical Research Consortia RDCRC for the Rare Diseases Clinical Research Network Retrieved February 8 2012 NIH Announces Expansion of Rare Diseases Clinical Research Network October 5 2009 Retrieved February 8 2012 NIH funds research consortia to study more than 200 rare diseases National Institutes of Health October 8 2014 Retrieved December 18 2015 NIH funding bolsters rare diseases research collaborations National Center for Advancing Translational Sciences 2019 10 02 Retrieved 2019 11 25 RDCRN Launches Contact Registry to Connect Patients Researchers and Advance Rare Disease Research Rare Diseases Clinical Research Network Retrieved 2022 03 15 RDCRN Contact Registry Rare Diseases Clinical Research Network Retrieved 2022 03 15 External links editRare Diseases Clinical Research Network RDCRN NIH Office of Rare Diseases Research ORDR RDCRN Contact Registry Retrieved from https en wikipedia org w index php title Rare Diseases Clinical Research Network amp oldid 1223063378, wikipedia, wiki, book, books, library,
