Welcome to the latest TREAT-NMD newsletter. This week's edition features a job opportunity in Newcastle and some interesting news from some of the national registries that partner with us in the TREAT-NMD global patient registries for DMD and SMA. Next week the TREAT-NMD partners are all coming together in Budapest for our fourth Governing Board meeting, so look out for a meeting report in an upcoming newsletter!
As always, we hope you enjoy the newsletter and look forward to hearing your comments - write to info@treat-nmd.eu with anything you'd like to say. Feel free to forward this message to anybody you think might find it of interest, or invite them to sign up to receive the newsletter by visiting our website. Back-issues of this newsletter can be found on our website at http://www.treat-nmd.eu/patients/news/ezine-archive/
Best wishes,
Katie, Volker, Steve, Emma, Rachel and Samantha: the Newcastle TREAT-NMD team
02-04 Feb 2009 TREAT-NMD Governing Board meeting
28 Feb 2009 - 01 Mar 2009 First Asian conference on Duchenne muscular dystrophy (DMD)
26-27 Mar 2009 UK Neuromuscular Translational Research Conference
12-15 May 2009 The Nottingham Systematic Review Course 2009
09-11 Jul 2009 "Therapeutic Targets in CMD", Emory University, Atlanta, Georgia
09-12 Sep 2009 IDMC-7 International Myotonic Dystrophy Consortium
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Job opportunity in Newcastle: 4-year clinical research training postAn exciting opportunity has arisen within the Institute of Human Genetics in Newcastle for a four year clinical research training post funded by the Wellcome Trust in translational medicine as it relates to inherited neuromuscular diseases. The successful candidate will follow a taught course in techniques related to translational medicine for one year, much of it delivered by international pharmaceutical experts, before embarking on a three year research position carrying out a PhD in the field of translational research. The post would be ideal for trainees in Neurology, Paediatric Neurology or Genetics.
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Update from the SMA registry in the USAThe International Spinal Muscular Atrophy Patient Registry in Indiana is a US-based initiative that is working with TREAT-NMD to provide data to the TREAT-NMD Global SMA registry. All patients registered in the registry will have their (encrypted) data forwarded to the TREAT-NMD Global Registry, which enables them to be considered for future international clinical trials. The International Spinal Muscular Atrophy Patient Registry is currently helping to recruit for several research studies.  MORE > |
UK Duchenne patient registry can now accept Irish patientsThe TREAT-NMD global registry for Duchenne muscular dystrophy (DMD) collects data from patients via many different national registries across the world, all of which feed their data into the TREAT-NMD global database. In the UK, the national registry for DMD that feeds information to the TREAT-NMD global registry is available online at www.dmdregistry.org. It is run by the patient support group Action Duchenne. The UK registry is pleased to announce that it can now also accept registrations from patients in Ireland.
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Press release from AVI BioPharma on proof-of-principle study of AVI-4568TREAT-NMD is in discussions with a range of pharmaceutical companies regarding the possibility of using the TREAT-NMD infrastructure to accelerate clinical trials. In addition to this, several TREAT-NMD partners are involved with trials in Duchenne muscular dystrophy that are already ongoing, including those run by PTC Therapeutics, Prosensa and AVI BioPharma. AVI BioPharma recently released a press release on its phase I proof-of-principle trial of the exon skipping product AVI-4658.  MORE > |
