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

¹ Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital and Monash University, Melbourne, Australia
² Royal Brompton Hospital, London SW3 6NP, UK
³ San Francisco General Hospital, San Francisco, California, USA

Correspondence to:
Dr J Wilson, Department of Allergy, Immunology and Respiratory Medicine, Alfred Hospital and Monash University, Commercial Road, Melbourne 3004, Australia; john.wilson{at}med.monash.edu.au

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.