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RDCRN Login
- https://members.rarediseasesnetwork.org/
- ×. GDPR statement for Members in the European Economic Area: By logging into this website, you are providing consent for the NIH-designated RDCRN Data Management and Coordination Center (DMCC) 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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Home | Rare Diseases Clinical Research Network
- https://www.rarediseasesnetwork.org/
- Contact them at 1-888-205-2311 or email [email protected]. Who We Are Established by Congress under the Rare Diseases Act in 2002, RDCRN is an initiative of the Office of Rare Diseases Research (ORDR) at the National Institutes of Health's (NIH's) National Center for Advancing Translational Sciences (NCATS).
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Sign in to your account - portal.dss.nyc.gov
- https://portal.dss.nyc.gov/doLogout.jsp
- Sign in to your account. Sign in. Email, phone, or Skype. Can't access your account? DHS Providers CARES Password Self Service portal : PSS Link.
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PDF 41. Data Management and Coordinating Center Summary ...
- https://www.rarediseasesnetwork.org/sites/default/files/ccrrd/summaries2018.pdf
- A public website that serves as a portal for the rare diseases community, including public and health care professionals, to provide information on research on rare diseases, consortium activities, practice guidelines and RDCRN protocols and sites. The public website is available in seven languages. b.
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Rare Diseases Clinical Research Network (RDCRN)
- https://www.facebook.com/RDCRN/posts/10166332974740092
- The Rare Diseases Clinical Research Network (RDCRN) is launching a contact registry to: Connect patients and researchers Advance our rare disease research Collect contact info of those who...
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Rare Diseases Clinical Research Network (RDCRN) | Facebook
- https://www.facebook.com/RDCRN/posts/10166322171960092
- Rare Diseases Clinical Research Network (RDCRN). 2,152 likes · 8 talking about this. The Rare Diseases Clinical Research Network (RDCRN) is an NIH-funded network fostering collaborative research...
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Hepatocellular Carcinoma in Acute Hepatic Porphyrias ...
- https://aasldpubs.onlinelibrary.wiley.com/doi/abs/10.1002/hep.31460
- Division of Liver Diseases, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. ADDRESS CORRESPONDENCE AND REPRINT REQUESTS TO: Behnam Saberi, M.D. Division of Liver Diseases, Icahn School of Medicine at Mount Sinai. Box 1123. 1425 Madison Ave., Room 11-73. New York, NY 10029. E-mail: [email protected]. Tel.: +1 ...
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Core Academic Unit Members - ODPRN
- https://odprn.ca/about-the-odprn/core-academic-unit-members/
- The Core Academic Unit (CAU) brings together a multidisciplinary team of leading health researchers from numerous academic centres across Ontario including McMaster University, Queen's University, the University of Ottawa, the University of Toronto, and the University of Western Ontario. The CAU serves as the academic core of the ODPRN to lead research activity and provide […]
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ALS... - Rare Diseases Clinical Research Network (RDCRN ...
- https://www.facebook.com/RDCRN/posts/10166339140545092
- ALS Toolkit Harnesses Power of the Electronic Health Record New research from the Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium:...
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7,000 challenges: The basis and burden of rare diseases ...
- https://www.science.org/content/webinar/7000-challenges-basis-and-burden-rare-diseases
- As the lead for the RDCRN program, she collaborates with 10 NIH Institutes to manage 22 consortia and RDCRN's central Data Management and Coordinating Center. RDCRN has more than 200 participating sites in 17 countries and more than 100 patient advocacy groups as research partners, and conducts research on about 200 rare diseases.
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Publications - Rare Diseases Clinical Research Network
- https://www1.rarediseasesnetwork.org/cms/autonomic/Healthcare-Professionals/Publications
- The ADC (U54NS065736) is a part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), NCATS. This consortium is funded through a collaboration between NCATS and the NINDS.
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Jeffrey R. Andolina, M.D., M.S. - University of Rochester
- https://www.urmc.rochester.edu/people/27439722-jeffrey-r-andolina
- A Prospective Natural History Study of Diagnosis, Treatment and Outcomes of Children With SCID Disorders (RDCRN PIDTC-6901) Lead Researcher: Jeffrey R Andolina This study is a prospective evaluation of children with Severe Combined Immune Deficiency (SCID) who are treated under a variety of protocols used by participating institutions.
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Video... - Rare Diseases Clinical Research Network (RDCRN ...
- https://www.facebook.com/RDCRN/posts/10166335860030092
- See more of Rare Diseases Clinical Research Network (RDCRN) on Facebook. Log In. Forgot account? or. Create new account. Not now. Related Pages. CMT-Connect. Interest. Mito Families! News. Health & wellness website. Charcot Marie Tooth Support. Cause. Carrie Ostrea, Rare Disease Advocate. Consulting agency. National Autism Association - New ...
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RDCRC Research Update - School of Medicine - Civitan ... - UAB
- https://www.uab.edu/medicine/circ/research/rdcrc/research-update
- RDCRC Productivity on Angelman, Rett, and Prader- Willi Syndromes . Enrollment: Enrollment in the three disorders in this consortium has proceeded well since we received authorization to begin enrollment in March 2006 for Angelman (AS) and Rett (RTT) syndromes and in 2007 for Prader-Willi syndrome (PWS).The higher target enrollment for Rett syndrome reflects the >200 mutations in this disorder ...
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Home - NORD (National Organization for Rare Disorders)
- https://rarediseases.org/
- NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases.
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Dystonia - Community Health - Community Health
- https://www.chcrr.org/health-topic/dystonia/
- Dystonia is a movement disorder that causes involuntary contractions of your muscles. These contractions result in twisting and repetitive movements. Sometimes they are painful. Dystonia can affect just one muscle, a group of muscles or all of your muscles. Symptoms can include tremors, voice problems or a dragging foot. Symptoms often start in childhood. They […]
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Research - Neurology - University of Rochester
- https://www.urmc.rochester.edu/neurology/research/labs-centers.aspx
- The Center for Neural Development and Disease (CNDD) at the University of Rochester Medical Center brings together faculty from diverse departments, including Neurology, Pediatrics, Biomedical Genetics, Biochemistry and Biophysics, Ophthalmology, Emergency Medicine, and Neurobiology and Anatomy, to carry out research directed toward ...
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NIH announces expansion of Rare Diseases Clin | EurekAlert!
- https://www.eurekalert.org/news-releases/591428
- The DTCC 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 ...
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Hepatocellular Carcinoma in Acute Hepatic ... - Wiley
- https://aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep.31460
- Division of Liver Diseases, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. ADDRESS CORRESPONDENCE AND REPRINT REQUESTS TO: Behnam Saberi, M.D. Division of Liver Diseases, Icahn School of Medicine at Mount Sinai. Box 1123. 1425 Madison Ave., Room 11-73. New York, NY 10029. E-mail: [email protected]. Tel.: +1 ...
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An Approach to Inherited Neuropathies with ... - Ambry Gen
- https://www.ambrygen.com/providers/webinar/112/an-approach-to-inherited-neuropathies-with-michael-e-shy-md
- An Approach to Inherited Neuropathies with Michael E. Shy, MD. This webinar will introduce the classification of inherited peripheral neuropathies typically called Charcot Marie Tooth disease. Then Dr. Shy will present the most frequent forms of the Autosomal Dominant, X-linked and Recessively inherited forms of CMT along with guidelines on why ...
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Saroglitazar Magnesium 4 mg for NASH in People Living With ...
- https://clinicaltrials.gov/ct2/show/NCT05211284
- Liver biopsy or radiologic imaging consistent with the clinical presence of cirrhosis or portal hypertension at screening. Participants whose Visit 2 ALT, AST, or alkaline phosphatase (ALP) values exceed their Visit 1 values by more than 50%. Note: These participants will be required to have a third value measured to assess for a trend.
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Patient Advisory Council for Research (PACR) | clic
- https://clic-ctsa.org/index.php/node/10301
- In 2017, the NYU Clinical and Translational Science Institute's Recruitment and Retention Unit created a Patient Advisory Council for Research (PACR) to provide feedback on clinical trials and health research studies. We collaborated with our clinical research informatics team to generate a random sample of patients, based on the International Classification of Diseases, Tenth Revision codes ...
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Oral Abstracts - 2021 - Hepatology - Wiley Online Library
- https://aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep.32187
- 1. DISRUPTION OF PITUITARY-LIVER UPR INTERACTION CONTRIBUTES TO NAFLD. Qingwen Qian 1, Mark Li 1,2, zeyuan Zhang 1, Shannon Davis 3, Kamal Rahmouni 4, Andrew W Norris 5, Wen-Xing Ding 6, Huojun Cao 7 and Ling Yang 1, (1)Foe Diabetes Center, Department of Anatomy and Cell Biology, University of Iowa, (2)University of Iowa, (3)University of South Carolina, (4)Department of Neuroscience and ...
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Links - National Registry for Myotonic Dystrophy (DM) and ...
- https://www.urmc.rochester.edu/neurology/national-registry/links.aspx
- Links Per the NIH website: "The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research.Helping to lead the way toward important medical discoveries that improve people's health and save lives, NIH scientists investigate ways to prevent disease as well as the causes ...
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