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RDCRN Login
- https://members.rarediseasesnetwork.org/
- Welcome to the RDCRN Login Page. To access the RDCRN, please choose your organization to verify your credentials. You may search for your institution by name or by typing your institutional email address, select it from a list, or choose from our suggested selections.
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Home | Rare Diseases Clinical Research Network
- https://www.rarediseasesnetwork.org/
- The Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research, NCATS, is made up of 21 disease research groups (consortia) and a Data Management and Coordinating Center that work together to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community.
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Members Login
- https://dm.hiidatacenter.org/
- GDPR statement for Members in the European Economic Area:. By logging into this website, you are providing consent for the University of South Florida (USF) Health Informatics Institute (HII) in the United States to process your personal data, such as your name and contact information, for the purpose of conducting rare disease research for the duration of the rare disease research project.
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RDCRN Contact Registry | Rare Diseases Clinical Research ...
- https://rdcrn.org/registry
- RDCRN consortia are studying 175 rare diseases at more than 270 sites in the United States and around the world. We host the tools and services needed to make large-scale research studies possible. We also directly interact with patients and their advocates and train new investigators (scientists and doctors) in rare diseases research.
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TrialNet Login
- https://www.diabetestrialnet.org/webapp/protocolmanager/pmadvfindparticipant.aspx?RDCRNProtocolId=01
- This data will be stored at the TrialNet Coordinating Center at the University of South Florida in the United States for the duration of TrialNet. By your continued use of this website, you are providing consent for the use of your personal data. You can contact the TNCC at [email protected] with questions or to withdraw your permission ...
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Contact Us | Rare Diseases Clinical Research Network
- https://www.rdcrn.org/contact
- The RDCRN Data Management and Coordinating Center (DMCC) is based at Cincinnati Children's Hospital Medical Center and the University of Cincinnati. The DMCC facilitates network operations, research, participant engagement, and data sharing. It also hosts the RDCRN websites. Please direct questions to [email protected]
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About CReATe - Rare Diseases Clinical Research Network
- https://www1.rarediseasesnetwork.org/cms/create/about
- The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium 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 Office of Rare Diseases Research (ORDR). ). CReATe is funded under grant number ...
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The NIH Rare Diseases Clinical Research Network (RDCRN ...
- https://www.rarediseasesnetwork.org/spotlight/december2010/rdcrn2
- The DMCC also created RDCRN's central public Web site, developed as a portal for the rare diseases community, including patients and their families and health care professionals, to provide information on rare diseases, relevant research, and other activities. Located at www.RareDiseasesNetwork.org, the web site had over 2.8 million visits in 2009.
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CReATe > Contact Us - Rare Diseases Clinical Research Network
- https://www1.rarediseasesnetwork.org/cms/create/Contact-Us
- The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium 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 Office of Rare Diseases Research (ORDR). ). CReATe is funded under grant number ...
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The Rare Diseases Clinical Research Network's organization ...
- https://europepmc.org/articles/PMC4124127/
- INTRODUCTION. The Rare Diseases Clinical Research Network (RDCRN), established in 2003 by the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH), currently located in the National Center for Advancing Translational Sciences (NCATS), comprises 17 consortia (each studying three or more rare diseases, Fig. 1), the DMCC, and more than 90 patient advocacy groups ...
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The Rare Diseases Clinical Research Network's Organization ...
- https://link.springer.com/article/10.1007/s11606-014-2894-x
- The Rare Diseases Clinical Research Network (RDCRN), established in 2003 by the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH), currently located in the National Center for Advancing Translational Sciences (NCATS), comprises 17 consortia (each studying three or more rare diseases, Fig. 1), the DMCC, and more than 90 patient advocacy groups (PAGs).1-5 (On ...
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"The Rare Diseases Clinical Research Network Contact ...
- https://digitalcommons.usf.edu/si_facpub/271/
- The Rare Diseases Clinical Research Network (RDCRN) Contact Registry has grown in size and scope since it was first reported in this journal in 2007. In this paper, we reflect on our seven years' experience developing and expanding the RDCRN Contact Registry to include many more rare diseases. We present the functional and data requirements that motivated this registry, and the new features ...
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Achieving Standardized Medication Data in Clinical ...
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2977947/
- The RDCRN uses electronic case report forms (CRFs). For questions structured ahead of time (meaning the medication of interest is "in the question"), the user does not need to be involved in coding. Questions inquiring about particular medications are easily placed on online CRFs, and coded into RxNorm by PEC at any time over the life of the study.
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Porphyria Resources
- https://www.utmb.edu/internalmedicine/divisions/gastroenterology/research/research-programs/porphyria-program/porphyria-resources
- The RDCRN provides the Consortium with data management support through its Data Management and Coordinating Center at the University of South Florida, as well as infrastructure support such as protocol development, data entry and warehousing, statistical consultation, site monitoring. ... Intranet Login.
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Sleep Abnormalities in Rare Genetic Disorders: AS, RTT ...
- https://clinicaltrials.gov/ct2/show/NCT02670694
- Sleep Abnormalities in Rare Genetic Disorders: AS, RTT, and PW (RDCRN) The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government.
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Osteogenesis Imperfecta (OI) Quality of Life Survey Pilot ...
- https://clinicaltrials.gov/ct2/show/NCT02793063
- Osteogenesis Imperfecta patients who have self-registered at the Brittle Bone Disorders Consortium (BBD) Consortium Contact Registry, a web-based contact registry developed and supported by the Data Management and Coordinating Center (DMCC) for the Rare Diseases Clinical Research Consortium (RDCRN), located at the University of South Florida.
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The partnership of patient advocacy groups and clinical ...
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4870759/
- Krischer JP, Gopal-Srivastava R, Groft SC, Eckstein DJ, Rare Diseases Clinical Research Network The Rare Diseases Clinical Research Network's organization and approach to observational research and health outcomes research. J Gen Intern Med. 2014; 29 (Suppl 3):S739-44. doi: 10.1007/s11606-014-2894-x.
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NIH Announces Expansion of Rare ... - University of Florida
- https://www.ctsi.ufl.edu/2009/10/05/nih-announces-expansion-of-rare-diseases-clinical-research-network/
- Monday, October 5, 2009 . The National Institutes of Health announced today a second phase of the Rare Diseases Clinical Research Network (RDCRN) including funds for 19 research consortia, including the UF Spinocerebellar Ataxia Clinical Research Consortium.
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(PDF) The Rare Diseases Clinical Research Network's ...
- https://www.researchgate.net/publication/264642160_The_Rare_Diseases_Clinical_Research_Network's_Organization_and_Approach_to_Observational_Research_and_Health_Outcomes_Research
- The Rare Diseases Clinical Research Network (RDCRN), established in 2003 by the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH),
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Primary Immune Deficiency Treatment Consortium - PIDTC ...
- https://www.facebook.com/RDCRN.PIDTC/posts
- Primary Immune Deficiency Treatment Consortium - PIDTC. June 21, 2017 ·. We had such a special time attending the Immune Deficiency Foundation 2017 National Conference, especially attending the Special SCID Symposium, hosted by Heather Dean-Smith and Amy Walsh! Check out this photo of some of the SCID families that attended.
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October » 2009 » Clinical and Translational Science ...
- https://www.ctsi.ufl.edu/2009/10/
- Monday, October 5, 2009 The National Institutes of Health announced today a second phase of the Rare Diseases Clinical Research Network (RDCRN) including funds for 19 research consortia, including the UF Spinocerebellar Ataxia Clinical Research Consortium.
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NIH announces expansion of Rare Diseases Clin | EurekAlert!
- https://www.eurekalert.org/news-releases/591428
- In this second phase of the RDCRN, the University of South Florida will continue these data management efforts, under a new name and with a slightly different charge, as the Data Management ...
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Log in - Elsevier
- https://authors.elsevier.com/tracking/authentication/login.do
- Please note you will not be able to use your existing Elsevier Profile, but will have to create a separate profile to access our Article Tracking pages.
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