A global registry for idiopathic pulmonary fibrosis: the time is now

Idiopathic pulmonary fibrosis (IPF) is a chronic progressive interstitial lung disease (ILD) of unknown aetiology with a median survival of only 3 years [1]. As a rare and orphan disease, IPF is difficult to study even within specialised referral centres and regional collaborative networks [2]. Although some local and regional prospective IPF registries exist, they generally do not share methodology and are not easily combined. A global IPF registry would facilitate a better understanding of disease biology and behaviour [3], as well as identification of regional variations in diagnostic and management patterns that will help establish best practices [4]. Moreover, a global IPF registry would create a network for more efficient and affordable clinical trial conduct [5–7], and provide a platform for collaboration among stakeholders (patients, caregivers, clinicians, researchers, professional and scientific societies, industry partners, and governments). We believe it is time to actively develop a global registry for IPF patients. The disease and the patients who suffer from it cannot wait. We propose a 5-year plan to achieve this goal (fig. 1). Figure 1– Major steps and the timeline for the development of a global idiopathic pulmonary fibrosis (IPF) registry. It …