Interstitial lung disease India Registry

Interstitial lungdisease (ILD) is a crippling pulmonary disease. Many patients do not respond toany treatment and crave for oxygen even during trivial daily routineactivities. The pattern of ILD varies in different countries. Though we havesome published studies about ILD in India, these were carried out in limitedareas.

ILD Registry, Indiais an initiative of Indian Chest Society, aimed to collect epidemiologicaldata, to understand natural course of disease, to identify associated riskfactors for improving survival of ILD patient and to evaluate the effect oftreatment.

Almost 40 leadingchest physicians of the country have volunteered to participate in thisinitiative of Indian Chest Society. They represent almost all regions of thecountry. With this registry we hope to find the specific pattern of the diseasein Indian subcontinent by the end of 2013. The pattern of treatment responsewill be evident in coming years. Discovery of novel treatment options would bea future venture of the registry.

OBJECTIVES

Inorder to understand this fatal disease, a network of most privileged clinicalscientists in the field of Interstitial Lung Disease will be established inIndia.

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

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

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

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

METHODOLOGY

The ILD India Registry, is anelectronic database of medical history, clinical examination, laboratory andradiological investigations of patients suffering from Interstitial LungDisease. Clinicians volunteering to participate in the registry will beevaluated for their bio-data, ILD patient load and relevant infrastructurefacilities. The selected investigators will be requested to fill the details ofthe prescribed proforma after obtaining written informed consent from thepatient. The project will be started after obtaining approval from ethicscommittee.

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

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