Studies currently in progress:

• Quality of life in children with SMA: A longitudinal survey-based study on QoL.
• Quality of life in children with muscular dystrophies and myopathies: a survey-based study on QoL.
• Factors affecting research participation in ALS patients: A survey-based research study on risks and benefits of research participation.
• Health-related quality of life in Children with DMD and SMA: A longitudinal survey-based study on HRQOL.
• Respiratory needs in children with DMD and SMA: A survey-based study on decision-making for ventilation needs.
• Cardiac complications in myotonic dystrophy patients: A data-based study on prevalence of and factors affecting heart complications in patients with DM.
• Neuromuscular respiratory technique utilization by practitioners across Canada: A survey-based study of Canadian health care practitioners’ use of respiratory techniques for neuromuscular patients.

Published Studies

• Provincial differences in the diagnosis and treatment of ALS patients in Canada
• Clinical Outcomes in Duchenne Muscular Dystrophy
• Nutritional Management in ALS
• Health-related Quality of Life in Children with DMD
• The relationship between quality of life and health-related quality of life in DMD
• Survey of Canadian Myotonic Dystrophy Patients’ Access to Computer Technology.
• Parent-reported impact of congenital and childhood onset myotonic dystrophy
• The CNDR: collaborating to translate new therapies for Canadians
• Establishing a Canadian ALS Registry
• Connecting Canadians with neuromuscular disease to research
• Does the index-to-ring finger length ratio differ in ALS?
• The TREAT-NMD DMD Global Database: Analysis of More than 7000 DMD Mutations
• TREAT-NMD DMD Registries: conception, design and utilization by industry and academia
• Mapping the differences in care in 5000 SMA patients, a survey of 24 national registries in North America, Australia and Europe.
• A multi-source approach to determine SMA incidence and research ready population
• The Canadian Neuromuscular Disease Registry: Connecting patients to national and international research opportunities.
• Myotonic Dystrophy registries: case study of global collaboration
• Spinal Muscular Atrophy in Canada: Findings from the Canadian Neuromuscular Disease Registry. In press.

And check out the CNDR Newsletter for our latest updates!