Australasian interstitial lung disease registry (AILDR): objectives, design and rationale of a bi-national prospective d
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RESEARCH ARTICLE
Open Access
Australasian interstitial lung disease registry (AILDR): objectives, design and rationale of a bi-national prospective database Irene Moore1* , Jeremy Wrobel1,2, Jessica Rhodes3, Qi Lin3, Susanne Webster3, Helen Jo3,4, Lauren Troy3,4, Christopher Grainge5, Ian Glaspole6,7, Tamera J. Corte3,4,7 and on behalf of the Australasian ILD Registry
Abstract Background: Interstitial Lung Disease (ILD) is a group of respiratory conditions affecting the lung interstitium often associated with progressive respiratory failure. There is increasing recognition of the need for improved epidemiological data to help determine best practice and improve standardisation of care. The Australasian ILD Registry (AILDR) is a bi-national registry of patients with all ILD subtypes designed to establish a clinically meaningful database reflecting real world practice in Australasia with an objective to improve diagnostic and treatment pathways through research and collaboration. Methods: AILDR is a prospective observational registry recruiting patients attending ILD clinics at centres around Australia and New Zealand. Core and non-core data are stored on a secure server. The pilot phase was launched in 2016 consisting of four sites in Australia. Currently in its second phase a further 16 sites have been recruited, including three in New Zealand. Results: A total of 1061 participants were consented during the pilot phase. Baseline data demonstrated a mean age 68.3 ± 12.5 (SD) years, mean FVC (%predicted) 79.1 ± 20.4 (SD), mean DLCO (%predicted) 58.5 ± 17.9 (SD) and nadir exertional SpO2 (%) 91 ± 6.9 (SD). Idiopathic pulmonary fibrosis (31%) and connective-tissue disease related ILD (21.7%) were the two most common subtypes. Baseline demographics and physiology were not significantly different across the four centres. Conclusion: AILDR is an important clinical and research tool providing a platform for epidemiological data that will prove essential in promoting understanding of a rare cohort of lung disease and provide foundations for our aspiration to standardise investigation and treatment pathways of ILD across Australasia. Keywords: Interstitial lung disease, Lung fibrosis, Autoimmune disease, Clinical epidemiology, Registry
Background Interstitial lung disease (ILD) encompasses a heterogeneous group of respiratory disorders characterised by inflammation and/or fibrosis of the lung interstitium. Broadly speaking, ILD can be divided into four main groups [1]. Firstly, there are the Idiopathic Interstitial Pneumonias (IIPs) including Idiopathic Pulmonary Fibrosis (IPF), the most common IIP, along with idiopathic non-specific idiopathic pneumonia * Correspondence: [email protected] 1 Advanced Lung Disease Unit, Fiona Stanley Hospital, PO Box Locked Bag 100, Palmyra DC, Perth, WA 6961, Australia Full list of author information is available at the end of the article
(iNSIP), acute interstitial pneumonia (AIP) and respiratory bronchiolitis-associated ILD (RB-ILD), to name a few. ILD attributable to known causes su
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