|
Rare Diseases Clinical Research Network Contact Registry
The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a patient contact registry started in 2004 and 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 disease research. The Rare Diseases Clinical Research Network (RDCRN) is a U.S.-based research network funded by the NIH. It fosters research to better understand, diagnose, and treat rare diseases. Its 20 consortia—teams of scientists, physicians, and patients—each study a group of related rare diseases. Established by Congress under the Rare Diseases Act of 2002, the RDCRN is an initiative of the Office of Rare Diseases Research at the NIH's National Center for Advancing Translational Sciences. Future research may produce helpful information for those with rare diseases. Individ ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Rare Diseases Clinical Research Network
The Rare Diseases Clinical Research Network (RDCRN) is an initiative of the Office of Rare Diseases Research (ORDR). RDCRN is funded by the ORDR, the National Center for Advancing Translational Sciences and collaborating institute centers. 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, 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 237 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 mo ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
National Institutes Of Health
The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late 1880s and is now part of the United States Department of Health and Human Services. The majority of NIH facilities are located in Bethesda, Maryland, and other nearby suburbs of the Washington metropolitan area, with other primary facilities in the Research Triangle Park in North Carolina and smaller satellite facilities located around the United States. The NIH conducts its own scientific research through the NIH Intramural Research Program (IRP) and provides major biomedical research funding to non-NIH research facilities through its Extramural Research Program. , the IRP had 1,200 principal investigators and more than 4,000 postdoctoral fellows in basic, translational, and clinical research, being the largest biomedical research instit ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Contemporary Clinical Trials
''Contemporary Clinical Trials'' is a monthly peer-reviewed medical journal covering clinical trials and research design in clinical medicine. It was established in 2005 and is published by Elsevier. The editor-in-chief is JoAnn E. Manson, MD, MPH, DrPH (Harvard Medical School). it was established in 1980 as ''Controlled Clinical Trials'' and obtained its current title in 2005. According to the ''Journal Citation Reports'', the journal has a 2020 impact factor The impact factor (IF) or journal impact factor (JIF) of an academic journal is a scientometric index calculated by Clarivate that reflects the yearly mean number of citations of articles published in the last two years in a given journal, as i ... of 2.226. References External links * {{Official website, http://www.journals.elsevier.com/contemporary-clinical-trials/#description General medical journals Elsevier academic journals English-language journals Bimonthly journals Publications established in 1980 [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Orphanet Journal Of Rare Diseases
The ''Orphanet Journal of Rare Diseases'' is a peer-reviewed open access medical journal covering research on rare diseases. It was established in 2006 and the editor-in-chief is Francesc Palau (Hospital Sant Joan de Déu Barcelona and CIBERER, Spain). It is an official journal of Orphanet and is published by BioMed Central, which is part of Springer Nature. Aims, scope and content By its own definition, Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes reviews on specific rare diseases, as well as articles on clinical trial outcome reports (positive or negative), and articles on public health issues in the field of rare diseases and orphan drugs. Readers can find contributions which are directly from patients affected by a rare disease or about events, such as the Rare Disease Day. Readers also have the possibility to search articles according to their subject or have t ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Rare Diseases Act Of 2002
The Rare Disease Act of 2002 is a law passed in the United States that establishes the statutory authorization for the Office of Rare Diseases as a federal entity able to recommend a national research agenda, coordinate research, and provide educational activities for researchers. Background A rare disease or disorder is defined in the U.S. as one affecting fewer than 200,000 Americans. There are more than 6,000 known rare diseases, and it is estimated that about 25 million Americans are affected by them (as of 2002). Prior to the RDA was the Orphan Drug Act of 1983 which was designed to facilitate the development and commercialization of drugs to treat rare diseases, termed ''orphan drugs''. This act however did not provide for the creation of a centralized structure able to coordinate research or recommend agendas that would better facilitate research and education. Legislative history S. 1379 (Rare Diseases Act of 2001) was introduced in 2001 by Sen. Edward Kennedy (D-MA) but ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Office Of Rare Diseases Research
The Office of Rare Diseases Research is a division of the National Center for Advancing Translational Sciences (NCATS) that oversees the Rare Diseases Clinical Research Network and Genetic and Rare Diseases Information Center. History The Office of Rare Diseases Research was established in 1993 within the Office of the Director of the NIH. Its responsibilities were mandated by statute by the Rare Diseases Act of 2002 The Rare Disease Act of 2002 is a law passed in the United States that establishes the statutory authorization for the Office of Rare Diseases as a federal entity able to recommend a national research agenda, coordinate research, and provide educ .... In 2011, the office became part of the newly created NCATS. ORDR is currently headed by Dr. Anne R. Pariser, who took over the position in February 2018. References {{reflist National Institutes of Health ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
National Center For Advancing Translational Sciences
The National Center for Advancing Translational Sciences (NCATS) was established in 2012 and is located in Bethesda, Maryland. NCATS is one of 27 institutes and centers of the US National Institutes of Health (NIH), an agency of the US Department of Health and Human Services. The mission of NCATS is to transform scientific discoveries into new treatments and cures for disease that can be delivered faster to patients. The budget provided to NCATS for fiscal year 2018 is $557,373,000. History NCATS was created in December 2011 by the Consolidated Appropriations Act, 2012. The center was created from a number of existing NIH programs: * Clinical and Translational Science Award program * Components of the Molecular Libraries Program * Therapeutics for Rare and Neglected Diseases * RAID renamed Bridging Interventional Development Gaps * Office of Rare Diseases Research * NIH–FDA Regulatory Science Initiative * Cures Acceleration Network (CAN) Divisions NCATS is organized into ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
Cincinnati Children's Hospital Medical Center
Cincinnati Children's Hospital Medical Center (CCHMC) is an academic pediatric acute care children's hospital located in the Pill Hill neighborhood of Cincinnati, Ohio. The hospital has 652 pediatric beds and is affiliated with the University of Cincinnati Academic Health Center. The hospital provides comprehensive pediatric specialties and subspecialties to pediatric patients aged 0–21 throughout southern Ohio and northern Kentucky, as well as patients from around the United States and the world. Cincinnati Children's Hospital Medical Center also treats adults, including adults with congenital heart disease and young adults with blood disease or cancer. Cincinnati Children's Hospital Medical Center also features a Level 1 Pediatric Trauma Center, 1 of 4 in the state. Cincinnati Children's is home to a large neonatology department that oversees newborn nurseries at local hospitals around Ohio. The hospital features an AAP verified 59-bed Level IV (highest possible) Newborn Int ... [...More Info...] [...Related Items...] OR: [Wikipedia] [Google] [Baidu] |
.jpg "Click for more on -> National Center For Advancing Translational Sciences")