Bio-Specimen Donation Initiative Webinar Video

A video screencast of our Bio-Specimen Donation Initiative webinar is available for those Advocacy Group Members who were not able to join us. Due to pre-publication restrictions on some of the information, this video is not available to the public or general subscribers to this site. Group Members can view the video on the Meetings…
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Bio-Specimen Donations Initiative Announced

On Sunday, February 9th, Focus On Rhabdo announced a new initiative that should significantly speed up the search for a means to make rhabdomyosarcoma a universally survivable disease. This effort was initiated by the families of RMS cancer patients because many patients and their families are unaware of the need to donate RMS tissue for…
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Rare Disease Day – Feb 28, 2014

February 28th has been designated as Rare Disease Day, a day where patient organizations around the world unite to promote awareness of the challenges, hopes and needs of those living with rare diseases. For 2014, the focus is on caregiving, and the global theme is “Join Together for Better Care.” As an advocacy organization supporting…
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Recent Papers on Rhabdomyosarcoma – 04 February 2014

From Google Scholar Alerts Please note that some are abstracts requiring subscriptions or purchase of the full article, others provide a more comprehensive view of the paper. Pleomorphic rhabdomyosarcoma of the cerebellopontine angle in an adult: a review of literature F Caporlingua, G Lapadula, M Antonelli, P Missori - BMJ Case Reports, 2014 Summary Rhabdomyosarcoma…
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National Academies Book On Clinical Trial Data Sharing

2/4/14 National Academies Book On Clinical Trial Data Sharing The National Academies Press just published a book on sharing clinical trial data - a topic of interest to each of us in the Rhabdo community. The book is available for purchase as a paperback for $ or as a free download in pdf format. You…
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New Phase 1 Clinical Trial – Dr. Timothy Cripe, Nationwide Children’s Hospital

Please read the information below for Dr. Cripe’s HSV1716 study. Please feel free to contact Melinda Lynn (see below) if you need additional information. Clinical Study for Children and Adults 7 to 30 Years Old With Refractory Non-CNS Solid Tumors What: This is a phase I dose escalation study of intratumoral or intravenous herpes simplex virus-1 mutant…
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Recent Papers on Rhabdomyosarcoma – 01 February 2014

From Google Scholar Alerts Please note that some are abstracts requiring subscriptions or purchase of the full article, others provide a more comprehensive view of the paper. Solid variant of alveolar rhabdomyosarcoma with patent ductus arteriosus AC Buch, PS Jadhav, NK Panicker, S Pal - Clinical Cancer Investigation Journal, 2014 Abstract Alveolar rhabdomyosarcoma is a…
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Recent Papers on Rhabdomyosarcoma – 30 January 2014

From Google Scholar Alerts Please note that some are abstracts requiring subscriptions or purchase of the full article, others provide a more comprehensive view of the paper. Impact of decreased heparin dose for flush-lock of implanted venous access ports in pediatric oncology patients G Rosenbluth, L Tsang, E Vittinghoff, S Wilson… - Pediatric Blood &…
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