The CNDR works collaboratively with clinical staff, patient organizations and the media to contact patients about the registry. For patients who are interested in joining the registry, informed consent is acquired and recorded using standard consenting procedures as required by the University of Calgary and local ethics committees in the regional centres.

Data collection is straightforward: standardized web-enabled forms are used by clinical staff to collect and enter basic health data (usually already included in patient charts) at regular visits. Patients are not required to undergo any special procedures. The local Principal Investigator and attending clinician retain access to their patient records within the central database at all times.

All data are maintained under stringent security and privacy protocols. Entries are checked automatically and personally identifying information is removed and stored separately. Any data transmission uses secure encryption procedures and database servers are maintained in a secure facility with strong password protection requirements and comprehensive security regulations and auditing.

Streamlined Process

• web enabled data entry

• no special procedures

• short focused dataset