The CNDR provides comprehensive support to participating clinics to ensure minimal disruption and maximum benefit to patients, clinic staff and physicians.

Streamlined Process

The CNDR has been designed to reduce overhead to the maximum extent possible. All materials including protocols, consent forms, and promotional materials have been templated for easy adaptation to regional centre requirements. Data collection is kept to the absolute minimum using international expert consensus standards, with no additional procedures required. Web-forms for data entry ensure consistency with minimal cost and training and support is available through the CNDR National Office. Start-up grants for Principal Investigators at regional centres help to offset initial and ongoing costs.

Registry Promotion

On-site patient information materials are provided for all participating clinics. Brochures and handouts can be tailored with site-specific clinic information and contact details. The CNDR works with multiple organizations and patient groups to promote the CNDR at a national level, and profiles participating clinics and physicians to the international community.

Enhanced Reporting Tools

Customized reporting formats can be developed for specific needs or unique clinical requirements. Individual reports can be generated to provide a snapshot of patient health status, to help with scheduling, or to provide a concise presentation of disease progression. Group reports can be generated according to region, clinic, physician, specific disease, or even disease phenotype. Canada-wide aggregate reports will be used to promote understanding of demographics and epidemiology of neuromuscular disease and enable further studies and research.