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.
- Provincial differences in the diagnosis and treatment of ALS patients in Canada: A data-based study evaluating Canadian Provincial differences in diagnosis and therapy use.
- Neuromuscular respiratory technique utilization by practitioners across Canada: A survey-based study of Canadian health care practitioners’ use of respiratory techniques for neuromuscular patients.
- 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!