The Neuromuscular Disease Network for Canada

funder-logos_nmd4c

News Release: Neuromuscular Disease Registry Helps Patients Access Research, Clinical Trials, New Genetic Tests, and Therapies

With data on more than 4,000 patients, the Canadian Neuromuscular Disease Registry celebrates a decade of facilitating research across Canada, reports the Journal of Neuromuscular Diseases

 

The Canadian Neuromuscular Disease Registry (CNDR) was launched in 2010 to increase efficient patient access to cutting-edge research and clinical trials, to increase understanding of the natural history and epidemiology of neuromuscular disease across Canada, and to facilitate research collaboration. An assessment of CNDR’s accomplishments, published in the Journal of Neuromuscular Diseases, found that it has been successful in securing funding and engaging the community over the past 10 years. With more than 4,000 enrolled patients, data from the registry have been used in over 125 research projects as of 2019, including clinical trial and research notifications, patient questionnaires, and data analyses around patient outcomes and care.

 

Read the full news release here

JND_CNDR_newsitem Logo

Read next...

logos-treat-nmd-logo

NMD4C steering committee member Dr. Jim Dowling appointed Chair of the executive committee of TREAT-NMD

The NMD4C would like to congratulate our Steering Committee member Dr. Jim Dowling on his appointment as Chair of the executive committee of TREAT-NMD!

ENMC logo topkwaliteit

Launch of ENMC Mid-Career Mentoring Programme

Building from the success of the ENMC Early-Career Programme, the ENMC is proud to launch a new and ambitious Mid-Career Mentoring Programme.

image001

Rare Disease Day 2021 Recap

Observed annually on the last day of February, Rare Disease Day seeks to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals.   Due to the COVID-19 pandemic, activities this year were mainly virtual. But that did not stop patients, caregivers, researchers, clinicians, advocates and patient…

International DM day announced

International Myotonic Dystrophy Awareness Day Declared for September 15, 2021

The NMD4C are proud to be a part of a global alliance of myotonic dystrophy-focused organisations who in honour of Rare Disease Day 2021 have united to announce the declaration of International Myotonic Dystrophy Awareness Day to be observed each September 15th.

vaccine_stock

MDC Press Release | Muscular Dystrophy Canada calls on provincial governments to prioritize persons affected by neuromuscular disorders for COVID-19 vaccine

As the voice of the NMD community in Canada, Muscular Dystrophy Canada (MDC) is calling on governments to prioritize people living with hereditary and acquired neuromuscular disorders in their vaccination roll-out.

Ask the Experts COVID 19

Webinar, FAQ Report & Decision Aid | COVID-19 & Neuromuscular Disorders: Ask The Experts

Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) have received numerous questions about COVID-19 vaccines and how they may uniquely affect people with neuromuscular disorders (NMD). To address these questions and concerns, MDC & NMD4C assembled a diverse group of neuromuscular, virology, and policy experts to host a webinar with the…