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Notice of Intent to Publish a Funding Opportunity Announcement (FOA) for The Rare Diseases Clinical Research Consortia (U54)
The Purpose of this Notice is to indicate the intent to publish a Funding Opportunity Announcement (FOA) to continue the Rare Diseases Clinical Research Network (RDCRN) Program and to alert potential applicants of the objectives of this cooperative agreement program. This FOA will be open to current Rare Diseases Clinical Research Consortia (RDCRC) as well as to new applicants. This Notice is being provided to allow potential applicants sufficient time to develop meaningful collaborations and responsive projects. The FOA is expected to be published in Spring 2013 with an expected application due date in Fall 2013. This FOA will utilize the U54 activity code. Details of the planned FOA are provided below.
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Congratulations to the 2013 Rare Disease Champion Eric Shrive
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Science of Small Clinical Trials Workshop – Presentations and Webcast now available
Small clinical trials may be appropriate and even a necessity in various contexts that include, but are not limited, to rare diseases. Being able to conduct them with scientific rigor is of increasing importance in the current regulatory and scientific environment. The Food and Drug Administration (FDA), in collaboration with the National Institutes of Health (NIH) Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), is conducting a 2-day public course titled The Science of Small Clinical Trials. This course will present an overall framework and provide training in the scientific aspects of designing and analyzing clinical trials based on small study populations.
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RoPR Arrives! AHRQ Launches Registry of Patient Registries (RoPR)
RoPR is a database of registry specific information intended to promote collaboration, reduce redundancy, and improve transparency.
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Social Security Announces New Compassionate Allowances Conditions
Michael J. Astrue, Commissioner of Social Security, today announced 35 additional Compassionate Allowances conditions are in effect, bringing the total number of conditions in the expedited disability process to 200. Compassionate Allowances are a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s standards for disability benefits. The program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years. These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children.
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NIH Launches Collaborative Program with Industry and Researchers to Spur Therapeutic Development
The National Institutes of Health today unveiled a collaborative program that will match researchers with a selection of pharmaceutical industry compounds to help scientists explore new treatments for patients. NIH's new National Center for Advancing Translational Sciences (NCATS) has partnered initially with Pfizer, AstraZeneca, and Eli Lilly and Company which have agreed to make dozens of their compounds available for this initiative's pilot phase.
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Rare Diseases and Scientific Inquiry print and web versions now available
ORDR is pleased to announce that the print version of the new middle school curriculum supplement, Rare Diseases and Scientific Inquiry, is available (U.S. addresses only) and can now be ordered from the NIH Office of Science Education (OSE) website. A downloadable version will available soon.
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Rare Diseases News from Google
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