New pan-Canadian neuromuscular network unites doctors, researchers and patients for better research and care

Network lead Dr Hanns Lochmüller

In case you missed it! Exciting news for Canadian NMD networking.

We’re excited to share news of the launch of our new pan-Canadian network on neuromuscular disease funded by CIHR and Muscular Dystrophy Canada. This is a great opportunity to develop better infrastructure for research, trials and care across Canada. Neuromuscular professionals should consider joining the network, while management and communications professionals might be interested in one of our open positions with the Lochmüller Lab in Ottawa: see the jobs on the NMD4C website and please do get in touch!

A new Canadian network for neuromuscular disease was launched at the beginning of February in Ottawa, the home of its coordination hub. NMD4C (NMD for Canada) received catalyst funding from the Canadian Institutes of Health Research and Muscular Dystrophy Canada to develop solutions that will enable healthcare professionals, researchers and patients to work together and share expertise.

The network brings together leading neuromuscular experts from across the country who will work with patient advocacy organizations including Muscular Dystrophy Canada, Jesse’s Journey and the Ottawa-Gatineau Myotonic Dystrophy Support Group on an ambitious three-year work program. The funds will help develop vital research infrastructure resources including a unique “virtual” biobank that will enable researchers to locate the precious samples they need for their research, no matter where they are in the country, and will go towards further development of the Canadian Neuromuscular Disease Registry, a resource that enables patients to be registered for research into their condition and potential clinical trial opportunities. A new generation of specialist neuromuscular disease clinicians will receive training in best-practice care and in the cutting-edge diagnostic techniques such as genome-wide sequencing that are revolutionizing diagnosis of these genetic disorders, while young scientists will be encouraged to pursue a research career in neuromuscular disease through new placement opportunities that will enable them to see the patients their research benefits. Patients living with neuromuscular diseases will have opportunities to receive training in research and ethics methodology so that they are empowered to advocate for themselves in a research context and steer research policy towards their priorities, and will participate in updates to best-practice care guidelines that will be rolled out to all participating centres across the country.

NMD4C is coordinated from Ottawa by the CHEO Research Institute’s Dr Hanns Lochmüller, a world-renowned neuromuscular clinician-scientist who has led international networking initiatives in Europe and has a career-long commitment to collaborative science and data sharing.

Dr Lochmüller said: “We’re absolutely delighted to receive this catalyst funding for our NMD4C network. Because neuromuscular diseases are individually rare, but collectively affect many children and adults across Canada, working together, pooling expertise and developing shared infrastructure on a national level is essential if we want to make rapid progress towards giving all Canadian patients world-class care and developing new treatments. This is a fantastic opportunity for doctors, researchers and the patient community to come together to do just that, and we can’t wait to get started.”

The coordinating centre and other network sites will be recruiting staff to work on the project – see this news item on the NMD4C website for details. This is a great opportunity to come and work with the Lochmüller Lab team in Ottawa – why not join us?

canada-nmd4c

Read next...

Sally describes lab research to FSHD visitors

Lochmüller Lab hosts information session on clinical research for FSHD

On Saturday June 11th we were delighted to welcome individuals and families living with facioscapulohumeral muscular dystrophy (FSHD) and members of the FSHD Society to...
JND-cover

May 2022 Issue of the Journal of Neuromuscular Diseases Available Online

The Lochmüller Lab is pleased to share that the the Journal of Neuromuscular Diseases has published its third issue of 2022! In Volume 9, Issue...
CHEO

CHEO Registers Tenth Patient in AMO Reach CDM Clinical Trial

The Lochmüller Lab is excited to share that as of March 14, 2022 our site at the Children’s Hospital of Eastern Ontario (CHEO) has registered...
CNDR_logo-2x3

Canadian Neuromuscular Disease Registry Launches New Congenital Myasthenic Syndrome Registry

We’re delighted to announce that a new registry for patients with congenital myasthenic syndrome (CMS) has just been launched within the Canadian Neuromuscular Disease Registry (CNDR).  This...
Lochmuller Lab at the Rideau Canal, group picture.

Lochmüller Lab Visits World’s Longest Skating Rink

This February the Lochmüller Lab took a break from the research benches at the CHEO RI to visit the Rideau Canal Skateway. A UNESCO world...
JND_V9-i1

January 2022 Issue of the Journal of Neuromuscular Diseases Available Online

The Lochmüller Lab is pleased to share that the the Journal of Neuromuscular Diseases has published its first issue of 2022! In Volume 9, Issue...