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1st July 2011
Clinical Trial Site Registry update

Planned as a repository of information on potential sites for multicentre clinical trials in neuromuscular diseases, the Clinical Trial Site Registry (CTSR) has attracted significant interest from both industry and academic institutions.

Currently, the CTSR contains data on over 200 registered sites in 41 countries worldwide and in the last two years nine official requests for the identification of potential trial sites have been received, many along with data requested from the TREAT-NMD Global Patient Registries.

In addition to this primary function, the CTSR has also developed as an international network of centres caring for many types of neuromuscular disorders. Furthermore, this network can also be used to disseminate care recommendations, and to evaluate current practice in different countries and individual centres. This is currently underway as part of the EU-funded CARE-NMD project to address care practices for Duchenne muscular dystrophy.

At a recent TREAT-NMD meeting the significance of the CTSR for the neuromuscular research community was stressed, however it was also evident that its usefulness depends on the completeness, coverage and quality of the data it contains. For this reason, the CTSR database has been restructured to include some additional questions concerning the care situation and clinical research activities of each of the registered centres. This additional data will also help to identify centres which are able to provide a defined level of care to their patients.

If you need to update your site information or just want to find out more about the CTSR itself please visit http://www.treat-nmd.eu/resources/neuromuscular-centres/ctsr

Registration for the 2011 TREAT-NMD conference is now open!
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The TREAT-NMD International Conference 2011 will take place from 8-11th November at Starling Geneva Hotel & Conference Center, Geneva, Switzerland. The focus will be on the challenges facing translational research and therapy development and delivery in neuromuscular diseases today.

Sessions will range from natural history, care standards and outcome measures to gene therapy, antisense approaches, stem cells and emerging technologies and will provide not only an update on the state of the art but also a forum for discussion of the challenges and strategies to bring therapies to patients.

Abstract submission deadline is 31st July. Please visit the conference website for details.

TACT Review meeting - deadline for applications approaching fast
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The next TREAT-NMD Advisory Committee for Therapeutics (TACT) review meeting will be held in Lisbon, Portugal on 15-16th October 2011 and TACT will review up to 4 applications. Anyone wishing to submit a proposal for this meeting should contact the TACT secretariat via emma.heslop@ncl.ac.uk, as soon as possible, in order to discuss this further as the deadline for applications is 15th July 2011.

TACT has received a number of applications for the upcoming meeting but would like to encourage additional applications from the whole neuromuscular community (clinicians, researchers, patient advocacy groups and industry). TACT's goal is to provide advice on the position of the potential therapy along a realistic pathway to clinical trials and registration by evaluating preclinical data as well as drug development considerations that are crucial for the conduct of studies that generate meaningful data. Further details about the TACT committee, process and the benefits of a TACT review can be found on the TREAT-NMD website at http://www.treat-nmd.eu/resources/tact/introduction/

Call for MDF postdoctoral research grant applications
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The Myotonic Dystrophy Foundation (MDF) is pleased to announce its 4th annual "Fund-A-Fellow" program, to support innovative research on myotonic dystrophy. This year's program has been expanded to include applicants from around the globe. On January 1, 2012, the MDF will award up to three postdoctoral research fellowships, each providing two years of support at US$50,000 per fellowship, per year.

The goals of the MDF are to stimulate research that is closely aligned with its core mission: to lead and mobilize resources toward effective management, treatment and a cure for myotonic dystrophy through education, advocacy, and research.

Next assessment round for ENMC workshop applications
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The deadline for submitting applications for ENMC workshops to be conducted in the first half of 2012, is 15th September 2011.

Application forms are now available for download from the ENMC website www.enmc.org. Please note that those applications that are incomplete or received after the deadline will not be processed for consideration. If you have any questions regarding this, please do not hesitate to contact the ENMC office enmc@enmc.org

Submission deadline September 15, 2011

Upcoming meetings
Past newsletters
TREAT-NMD conference 2011
1st July 2011
TREAT-NMD newsletter - 1st July 2011
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