Australasian Registry Network for Orphan Lung Disease

Case reporting

Registered members will receive a quarterly email containing two links:

No cases to report

A single mouse click via an email hyperlink enables clinicians to notify the database as ‘No cases to report this quarter’ without logging on to the website. The email contains a unique clinician and mailshot identifier.

Case(s) to report

If there are cases to report then a ‘Case to report’ hyperlink will access this website where the type of case and number of cases to report can be entered. 

Clinicians diagnosing and registering a case enter the following details: the first two letters of the patient’s given name and family name, date of birth, postcode and reporting disease. The case will be identified as a ‘new’ case to the clinician or a ‘follow up not previously reported’ to enable the incidence and prevalence to be more accurately calculated. These details are transmitted securely and further encrypted before being stored in the database.

Clinicians submitting positive cases are then provided with, an ‘aide memoiré’ page (to record and print basic patient details) to be kept locally with the reporting clinician. The reporting physician will keep a local record of the patients they have reported. This will allow the potential recruitment of these patients in the future into more detailed studies beyond the scope of this registry.