The Neuromuscular Disease Network for Canada


Clinical trial coordination resources

Leads: Craig Campbell, Jim Dowling

Currently, NMD trial sites are approached by sponsors (pharmaceutical companies and their contract research organizations) individually, in an uncoordinated fashion. This leads to highly repetitive work for the investigators and their staff, as the same information is requested repeatedly, in different formats and by different parties. This method is inefficient and creates inconsistent access for patients, as some sites may become over-committed while other sites have under-used capacity. NMD4C will set up an information exchange network for all Canadian sites, and will rapidly release information to patients where permitted. Information will include clinical trial opportunities, ethics protocols, budgets and other trial material. Further, NMD4C will coordinate with sponsors directly, and use the existing CNDR platform to reduce inconsistencies and increase trial capacity.


  • Information exchange network for trial coordination centres
  • Information on clinical trials and access to therapies
Clinical trial

Relevant publications

Rodger, S, Lochmüller, H, Tassoni, A, Gramsch, K, König, K, Bushby, K et al.. The TREAT-NMD care and trial site registry: an online registry to facilitate clinical research for neuromuscular diseases. Orphanet J Rare Dis. 2013.8 171 PMID:24148153

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