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 facilitated by the Clinical Trial Concierge
  • 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

Read next...


Patient registries

Leads: Craig Campbell, Lawrence Korngut Patient registries collect information about individuals who are affected by a particular condition and are a particularly important research and...
Researcher wearing gloves arranging blood sample tubes in a rack


Working Group Members: Jason Karamchandani, Bernard Brais, Rashmi Kothary, Jodi Warman Chardon, Hanns Lochmüller, Homira Osman, Gerald Pfeffer, Élise Duchesne   Biobanks are organized collections...

Our work plan

Thanks to funding from CIHR and MDC, NMD4C has launched a three-year work plan to achieve its mission of improving care and treatment of NMDs...

Network development

Bringing people together to achieve joint goals and share expertise is a crucial foundation for better research and care across Canada. NMD4C is a sustainable...

Training and education

A key goal of NMD4C is to train and educate the next generation of NMD stakeholders. Genomics training (Leads: James Dowling, Jodi Warman Chardon) Canadian...