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Spotlight on Rare Diseases: Quarterly Newsletter of the NIH Rare Diseases Clinical Research Network
2nd Conference on |
The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and the Office for Rare Diseases Research (ORDR). RDCRN was created to facilitatecollaboration among experts in many different types of rare diseases. Our goalis to contribute to the research and treatment of rare diseases by workingtogether to identify biomarkers for disease risk, disease severity and activity,and clinical outcome, while also encouraging development of new approaches todiagnosis, prevention, and treatment.
About the Data Management Coordinating Center (DMCC) >
On February 27, 2003, ORDR in response to the Rare Diseases Act of 2002, P.L.107-280, released a Request for Applications (RFA) for a Rare DiseasesClinical Research Network together with the National Center for ResearchResources (NCRR)/General Clinical Research Consortium (GCRC) Program and incollaboration with other NIH Institutes. ORDR, NCRR, and the National Instituteof Child Health and Human Development (NICHD), National Institute ofNeurological Disorders and Stroke (NINDS), National Institute of Arthritis andMusculoskeletal and Skin Diseases (NIAMS), National Institute of Diabetes andDigestive and Kidney Diseases (NIDDK), and the National Heart, Lung, and BloodInstitute (NHLBI), all components of the NIH, funded ten rare diseases clinical researchconsortia and one Data and Technology Coordinating Center. On February 8,2009, the ORDR, in collaboration with 10 NIH Institutes, released two RFAs forthe recompetition of the RDCRN. In collaboration with NICHD, NINDS, NIAMS,NIDDK, NHLBI, National Cancer Institute (NCI), National Institute on Aging(NIA), National Institute on Alcohol Abuse and Alcoholism (NIAAA), NationalInstitute of Allergy and Infectious Diseases (NIAID), and the National Instituteof Dental and Craniofacial Research (NIDCR), ORDR issued an RFA for therecompetition of funding for individual consortia. In collaboration with NINDS,ORDR released an RFA for the recompetition of funding for the data managementcenter. On October 5, 2009, the NIHannounced that ORDR, in collaboration with NINDS, NICHD, NHLBI, NIDDK,NIAID, NIDCR, and NIAMS, funded 19 rare diseases clinical research consortia andone Data Management Coordinating Center.
October 5, 2009 Press Release: NIH Announces Expansion of Rare Diseases Clinical ResearchNetwork
May 5, 2006 Press Release: NIH Launches Clinical Studies Nationwide to Investigate Rare Diseases
November 3, 2003 Press Release: NIH Establishes Rare Diseases Clinical Research Network
Other News:
June 17, 2010: U.S. Food and Drug Administration's Office of Orphan Products Development (OOPD) Creates New Resource for Drug Developers: The Rare Disease Repurposing Database (RDRD)
The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and the Office for Rare Diseases Research (ORDR). RDCRN was created to facilitate collaboration among experts in many different types of rare diseases. Our goal is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment. More About the RDCRN >
