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17th June 2011
 
Register for the TREAT-NMD conference

Registration for the TREAT-NMD conference in November is now well underway. Details of the conference's exciting programme and how to register can be found on the conference website.

 
 
Canadian neuromuscular disease registry goes live!

Supported by the ALS Society of Canada, Jesse's Journey and the Marigold Foundation, the Canadian Neuromuscular Disease Registry (CNDR) is now live and recruiting. The CNDR is a Canada-wide database of patients who have been diagnosed with a neuromuscular disease.

The registry will help patients connect with researchers so they can participate in clinical research which may result in new therapies, treatments and understanding of their disease. All patients (both adults and children) across Canada who have been diagnosed with a neuromuscular disease are able to join the registry. There are seventeen clinics across the country located in larger cities. Patients living outside the cities with affiliated clinics, or those not currently seeing a neuromuscular specialist, can register by contacting the CNDR National Office at the University of Calgary at 1-877-401-4494. Further details of the launch can be found here.

 
 
 
FSHD patient registry core dataset agreed on
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As a follow-up to an ENMC workshop on FSHD (171st ENMC international workshop: Standards of care and management of facioscapulohumeral muscular dystrophy, Tawil R, van der Maarel S, Padberg GW, van Engelen BG. Neuromuscul Disord. 2010 Jul;20(7):471-5), FSH experts led by Rabi Tawil, Baziel van Engelen and Hanns Lochmuller have agreed on a harmonized core dataset for current and future FSH registries. This is thought to be an important step towards accelerating international research efforts on FSH, in particular facilitating clinical trials.

The ENMC workshop consortium agreed that this core data should consist of five sections covering contact information, genetic test results, diagnosis, motor function and ambulation status. Consortium members were keen not to burden the registry participants (patients and professionals alike) with too many items/questions, as this usually leads to poor uptake and participation.

The national registries that will be managing the registry in their own country are free to include additional (optional) items. However, most items will be captured either through self-report (by patients) or through professional report (treating clinicians), and it is up to the stakeholders in each country to decide on the best way forward that suits their national situation.

 
 
 
 
MDA hosts Becker event with live streaming
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The Muscular Dystrophy Association, Cedars-Sinai Medical Center and BeckerMD.org are hosting a one day conference in Los Angeles on 13th August specifically focussing on different aspects of Becker Muscular Dystophy. Attendance is free and those who wish to attend will need to contact julie.groth@cshs.org by July 29, 2011 to confirm attendance as places are strictly limited.

Attending delegates will be able to hear from a panel of individuals with Becker muscular dystrophy about living with BMD, as well as the latest BMD updates from expert physicians and scientists on topics including clinical care; cardiac treatment and research; physical therapy; and research and clinical trials.

For those who can't attend in person, there will be a live webcast hosted by BeckerMD on Ustream that can be found at: http://www.ustream.tv/channel/bmd-2011-conference---los-angeles.

 
 
 
 
NIH/NINDS launch SMA biomarker study funding call
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NINDS are inviting funding applications for a study of candidate biomarkers in SMA. Letters of intent are due by 1st August. Applications can be submitted from 1st August with the closing date being 1st September 2011. Reviews will take place later in the year with a start date of 1st April 2012 expected.

NINDS will hold an informational webinar to discuss this call at 11 am EST on July 11th, 2011. A link with the call-in number as well as the hyperlink for viewing of the projected slides will be provided at www.ninds.nih.gov/NeuroNEXT. Interested parties may send questions directly to Dr. Elizabeth McNeil.

Although international applications are welcome, the study will be conducted using the American NeuroNEXT infrastructure.

Further details can be found in the grants section of the NIH website.

 
 
 
 
Upcoming meetings
 
Past newsletters
 
TREAT-NMD conference 2011
 
17th June 2011
TREAT-NMD newsletter - 17th June 2011
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