Interstitial lung disease (ILD) is a crippling pulmonary disease. Many patients do not respond to any treatment and crave for oxygen even during trivial daily routine activities. The pattern of ILD varies in different countries. Though we have some published studies about ILD in India, these were carried out in limited areas.

ILD Registry, India is an initiative of Indian Chest Society, aimed to collect epidemiological data, to understand natural course of disease, to identify associated risk factors for improving survival of ILD patient and to evaluate the effect of treatment.

Almost 40 leading chest physicians of the country have volunteered to participate in this initiative of Indian Chest Society. They represent almost all regions of the country. With this registry we hope to find the specific pattern of the disease in Indian subcontinent by the end of 2013. The pattern of treatment response will be evident in coming years. Discovery of novel treatment options would be a future venture of the registry.

OBJECTIVES

In order to understand this fatal disease, a network of most privileged clinical scientists in the field of Interstitial Lung Disease will be established in India.

·         To evaluate pattern and natural course of the disease in India.

·         To characterize the  ILD among Indian patients and identify phenotypes of IIP/ILD

·         To identify associated causative factors and to suggest improved methods of prevention in high risk group.

·         To establish more advanced diagnostic and treatment plans for Interstitial Lung Disease.

METHODOLOGY

The ILD India Registry, is an electronic database of medical history, clinical examination, laboratory and radiological investigations of patients suffering from Interstitial Lung Disease. Clinicians volunteering to participate in the registry will be evaluated for their bio-data, ILD patient load and relevant infrastructure facilities. The selected investigators will be requested to fill the details of the prescribed proforma after obtaining written informed consent from the patient. The project will be started after obtaining approval from ethics committee.

Site investigators will send completed proforma along with relevant documents such as PFT report, X-Ray chest, CT scan (preferably CD) and histopathology slides along with copy of biopsy report. The blinding process will be done by putting patient code number in place of the name. National coordinator will be responsible to manage all the data in electronic format. An independent expert panel will review data of each patient to confirm the diagnosis. The expert panel will have two radiologists, two clinicians and two histopathologists. Data of the patient along with confirmed diagnosis will be entered in the registry. Diagnostic query of the panel will be sent to the investigator, in case the diagnosis is not verified. Information of the evaluation report of the expert panel will be communicated to the submitting site investigator. All original documents will be returned to the investigators.

The participating centers will also send reports of the patient coming on follow-up visits. Any unforeseen event such as death of the patient will also be informed to the registry.