The ILDPAK Registry is an electronic database of clinical details and diagnostic investigations of patients suffering from Interstitial Lung Disease. Clinicians who participate in the registry will be requested to fill the details of the prescribed proforma after obtaining written informed consent from the patient. The collaborating pulmonologist from each site would be responsible to obtain approval from their respective institutional Ethics Review Board.
The collaborating consultant pulmonologist will depute a responsible person to fill in the online pro forma according to the guidelines and the inclusion criteria. After uploading it online, the supporting documents (such as PFT reports, HRCT scans, ECHO reports and so on) should be emailed to firstname.lastname@example.org.
The collaborating pulmonologist will maintain a hard copy of the pro forma after filling in the relevant details. He will require a written HRCT and histopathology opinion where applicable) from one radiologist and/or histopathologist, trained in reading HRCT and histopathology slides, relevant to ILD. It is understandably preferable to designate a radiologist and histopathologist to maintain uniformity in diagnostic criteria. The opinions of the additional radiologists and histopathologists can be obtained in cases of doubt, and the HRCT and biopsy specimens may be reviewed by senior radiologists/ histopathologists available with us. In such a case, all original documents will be returned after review.
A follow up form is also present in the registry to record follow up visits with investigations and medications. This may kindly be filled up and sent to us at email@example.com at quarterly intervals.
In case of any unforeseen event such as the death of the patient, or loss to follow up for more than six months, the participating centers must inform the registry.