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25th March 2011
TACT advice: summary reports from January meeting now available online

TACT, the TREAT-NMD Advisory Committee for Therapeutics, evaluated two proposals at its review meeting on 15-16 January  2011. The full TACT reports with recommendations were sent to the applicants within 6 weeks of the meeting and the corresponding non-confidential summaries, approved by the applicants, have now been uploaded to the TACT webpage on the TREAT-NMD website.

The proposals reviewed were:

  • ‘Tetracycline Derivatives as SMN2 Splicing Modifiers for the Treatment of SMA’  submitted by Dr Paul Higgins, Paratek Pharmaceuticals, USA
  • ‘Therapy for Muscular Dystrophy by Inhibition of Mechanosensitive Ion Channels’, submitted by Dr Frederick Sachs, Rose Pharmaceuticals, USA

The next TACT review meeting will be held in Lisbon, Portugal on 15-16 October 2011 (immediately prior to the 2011 WMS meeting). Anyone wishing to submit a proposal for this meeting should contact the TACT secretariat via emma.heslop@ncl.ac.uk in order to discuss this further. The deadline for applications is 15th July 2011

TACT gratefully acknowledges the financial support of the patient organization PPMD towards the costs of the January meeting. 

To read the full non-confidential summaries, click the 'more' link below.

Recent additions to the registry of outcome measures
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During the last few weeks a number of new records have been added to the Registry of Outcome Measures (ROM).  You can access a list of recent additions on www.researchrom.com/ra. Two new upper limb functional items have been added: the assisting hand assessment and the manual ability classification system. The muscular dystrophy functional rating scale is also now available, and a gait measuring device known at DataGait has been added.

For anyone interested in myotonic dystrophy, inclusion body myositis and fascioscapulohumeral dystrophy, ROM is presently supporting international collaborative efforts towards the identification of outcome measures and related information that we hope will serve to inform future discussions and decisions in the selection of outcome measures.

If you know of an outcome measure that is used or potentially suitable for application in NMD and is not yet published in ROM, please get in touch.

Russian Spring School of Myology: Moscow, 18-21 April
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This specialist neuromuscular training course for healthcare professionals will take place in Moscow from 18-21 April 2011. Registration is open to clinicians from across Russia and other Russian-speaking countries.

Designed in the style of the myology summer schools that are held every year in Paris and London, the aim of the course is not only to provide updates on different aspects of neuromuscular disease care and research but also to encourage networking and communication between different muscle centres and disciplines.

Submit your WMS poster abstracts by 31 March!
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Abstracts for the 2011 WMS congress in Portugal need to be submitted by 31st March at the latest to be considered for inclusion. Your abstract should contain a maximum of 300 words or 2000 characters.

Poster topics should fall into one of the following areas: Duchenne and Becker muscular dystrophy and associated dystrophinopathies; New developments in spinal muscular atrophies and hereditary neuropathies; Advances in therapy of neuromuscular disorders or Advances in all other neuromuscular fields.

Please visit the WMS 2011 website for further details on how to submit your abstracts.

Myology 2011 Congress:
Deadline for late-breaking news submission 15 April
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The Myology Congress 2011 will take place from May 9 to 13 in Lille, France, at the Lille Grand Palais. The scientific organization committee welcomes late breaking news, ideally with hitherto unpublished data having a significant impact in the field of myology, to be included in the "surprise box" session on the final day of the conference (Friday 13 May 2011).

To have your late-breaking news considered for this session, please send a short overview to Dr Andoni Urtizberea, andoni.urtizberea@hnd.aphp.fr

Upcoming meetings
Past newsletters
TREAT-NMD conference 2011
25th March 2011
TREAT-NMD newsletter no. 97
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