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What is required of our clinic?
Patients with both indexed diseases and non-indexed diseases can participate in the CNDR. Each patient must provide informed consent. Your clinic will need to obtain informed consent from each patient, and designate someone for data entry. Training and support for this is provided by the CNDR National Office.
How is data entered into the CNDR?
The CNDR uses web-portal based data collection. Your designated data-entry personnel will be provided with user privileges and secure log-in information for data entry. Clinic physicians involved in patient recruitment can also be provided with user and local administrative privileges. Data from each clinic is segregated, so you will only be able to view data on your patients, and no other clinic will be able to see your patients' data.
How will participating help my patients?
All patients enrolled in the CNDR who have provided consent to be contacted regarding research opportunities will receive notifications from the CNDR National Office of potential research opportunities they will be eligible for. At no time will the patients' personal contact information be released from the database. Data collected in the CNDR is also de-identified and aggregated for studies of neuromuscular disease in Canada. By providing high-quality data on patients with neuromuscular disease in Canada the CNDR hopes to improve the opportunities for research and clinical trials for patients in Canada. All requests for data and research opportunities are reviewed by the CNDR Advisory Committee before the CNDR contacts patients.
How will I benefit from having my clinic participate?
The CNDR aims to connect healthcare professionals treating neuromuscular disease across the country. We hope to provide you with comprehensive communication regarding best practices in treatment and research opportunities. Additionally, you have the opportunity to join CNDR disease working groups that develop and review the indexed disease datasets each year. The CNDR also accepts research proposals from internal investigators seeking regional data for relevant research.
Will I receive financial compensation if my clinic participates?
The CNDR recognizes that clinic time is scarce. Every effort has been made to make data collection minimally intrusive. The CNDR does provide a small financial contribution toward the cost of data-entry. In addition, full training and support from the CNDR National Office are provided to your clinic staff.
I want to sign up. Where do I start?
Each neuromuscular clinic across Canada that is participating in the CNDR is affiliated with a Site Principal Investigator based at an accredited academic institution. The CNDR National Office will consider whether your clinic should become a Regional Site, or if a Regional Site in your area already exists, the CNDR National Office will connect you with the Site Principal Investigator to obtain ethics approval. To begin this process please contact the CNDR National Office.
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