Challenges in pulmonary fibrosis: 8 · The need for an international registry for idiopathic pulmonary fibrosis

Abstract

Improved survival from idiopathic pulmonary fibrosis (IPF) is dependent on better understanding of the epidemiology of the disease, its diagnostic spectrum in global terms and an analysis of outcomes from emerging therapies at a significant level. Outside major lung transplant centres, few institutions have significant numbers to provide this information. Relevant examples exist to justify the establishment of registry data to achieve these aims. The gains seen in cystic fibrosis, lymphangioleiomyomatosis and lung transplantation over the past decade stem from optimisation of treatment plans through registry data. We advocate for an international registry to achieve better outcomes in IPF.