Welcome to the 64th Newsletter from TREAT-NMD.
This week we feature the kick-off meeting of TREAT-NMD's Advisory Committee for Therapeutics (TACT), an exciting new venture that will provide unbiased advice to the neuromuscular community on the readiness of drugs and therapeutic targets as likely candidates for therapies for neuromuscular diseases. The importance of the global registry initiative is also highlighted: more than 30 countries worldwide are now involved, and the registries are being used not only by industry for trial planning but also to provide important feedback to patients and give them a link to the research community.
TREAT-NMD offers many services to industry, and the biotech company Santhera is partnering with TREAT-NMD over physiotherapy training for its pivotal Phase III study with Catena®/Sovrima® for DMD. Academic training is also available, and in cooperation with the University of Belgrade TREAT-NMD organised a training course in Belgrade in September with 34 trainees attending from 5 CEE countries.
Full programme details for our International Conference are now online. There is still time to book a place at the conference and also to submit a question for our panels of experts to consider.
As always, if you have a news article that you would like us to include in our fortnightly newsletter, please contact the coordination office - which this week welcomes a new member. Karen Rafferty has joined us to help implement TREAT-NMD tools and services in the UK in a joint project with the UK patient organisation Action Duchenne.
Best wishes from Katie, Volker, Hanns, Steve, Emma, Rachel, Samantha, Karen and Michael,
the Newcastle TREAT-NMD team.
23-24 Oct 2009 Action Duchenne International Conference Holiday Inn Bloomsbury London
14-18 Nov 2009 Mechanisms Involved in Muscle Atrophy and Hypertrophy, Carmona, Spain.
17-19 Nov 2009 TREAT-NMD / NIH International Conference
27 Nov 2009 King's College London Neuromuscular Symposium
26-27 Feb 2010 Towards a Brighter Future - Sydney, Australia.
10-17 April 2010 American Academy of Neurology Annual Meeting - Toronto, Canada.
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TACT kick-off meeting develops strategy for unbiased drug candidate appraisalThe TREAT-NMD secretariat welcomed the members of the core committee of TACT (the TREAT-NMD advisory committee for therapeutics) to Newcastle for the weekend of 3-4 October for the committee’s kick off meeting. The formation of TACT has been one of the key achievements of the past year. A very exciting group has been assembled with wide ranging expertise in many areas, formed in response to the need to have an impartial means to evaluate the potential of therapeutic targets suggested to play a role in NMD, especially the candidates coming out of studies in animal models. Key to the success of this venture will be a commitment to high quality advice, so that the people presenting a possible candidate for appraisal by TACT will be assured of getting impartial and excellent information allowing them to plan a route forward to registration or alternatively to allow them to see the risks in such a strategy.  MORE > |
TREAT-NMD / NIH International Conference: full programme now onlineThe programme for the TREAT-NMD /NIH international conference has been finalised and we encourage all our readers to take a look to find out full details of this key event. The full programme can be downloaded here and can also be readily found on the front page of the conference website.  MORE > |
Third curator training meeting shows TREAT-NMD patient registries are going from strength to strengthOver 30 countries worldwide are now part of the TREAT-NMD global registries initiative for Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA) and have national registries either already established and enrolling patients or in the setup phase. More than 90 participants from 23 countries attended the third annual patient registry curator training meeting, which took place from September 7–9 in Montpellier, France. For the first time, representatives of registries for other neuromuscular diseases were also present, and participants heard about initiatives in myotonic dystrophy, congenital muscular dystrophy and more.  MORE > |
TREAT-NMD to assist with physiotherapy training for Santhera's pivotal trialTREAT-NMD announces that it has agreed to collaborate in providing professional physiotherapist training for Santhera Pharmaceutical’s pivotal Phase III study with Catena®/Sovrima® (INN: idebenone) for the treatment of Duchenne Muscular Dystrophy (DMD). The 12-month DELOS study will enrol up to 240 patients in approximately 25 centres in Europe and North America. At least one physiotherapist for each study centre is expected to be trained with support of TREAT-NMD.  MORE > |
TREAT-NMD training course takes place in BelgradeIn cooperation with the Clinic for Neurology and Psychiatry for Children and Youth of the Medical Faculty of the University of Belgrade, Serbia, TREAT-NMD organized a training course for professionals entitled “Hot topics in muscular dystrophies and SMA – preparing for clinical trials”. Taking advantage of the hosting in Belgrade of the 39th AGM of EAMDA, the European Alliance of Neuromuscular Disorders Associations, the meeting took place on September 17th, 2009 in the Clinic for Neurology and Psychiatry for Children and Youth. Local and international experts combined to provide a focused training course on topics of particular interest to local professionals.  MORE > |
American Academy of Neurology - Scholarship Awards 2010The American Academy of Neurology is offering another International Scholarship Award for 2010. The deadline for applications is 30th November 2009, and as part of the award requirements applications must also submit a scientific abstract for the 2010 meeting - this has a dealine of 2nd November 2009.  MORE > |
