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Table 1 Prevalence of rare lung diseases in Australia between 2009 and 2014– paediatric, adult and general population

From: Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

Disease Paediatric Adult Total population
No. of reports Prevalence per million No. of reports Prevalence per million No. of reports Prevalence per million
Acute idiopathic eosinophilic pneumonia 1 0.18 2 0.12 3 0.13
Children’s interstitial lung disease (ChILD) 21 3.80 0 0.00 21 0.92
Chronic idiopathic eosinophilic pneumonia 0 0.00 7 0.40 7 0.31
Churg-Strauss vasculitis 0 0.00 9 0.52 9 0.39
Congenital Malformations of the Trachea 4 0.72 0 0.00 4 0.18
Cryptogenic organising pneumonia 0 0.00 21 1.21 21 0.92
Cystic lung lesions 12 2.17 5 0.29 17 0.74
Diaphragmatic Hernia 1 0.18 2 0.12 3 0.13
Diffuse panbronchiolitis 0 0.00 1 0.06 1 0.04
Drug reactions with eosinophilia 0 0.00 2 0.12 2 0.09
Extrinsic allergic alveolitis 0 0.00 16 0.93 16 0.70
Follicular bronchiolitis 1 0.18 0 0.00 1 0.04
Goodpasture syndrome 0 0.00 3 0.17 3 0.13
Hereditory haemorrhagic ataxia telangiectasia 0 0.00 7 0.40 7 0.31
Idiopathic pulmonary haemosiderosis 5 0.90 4 0.23 9 0.39
Langerhans cell histiocytosis 0 0.00 7 0.40 7 0.31
Lobar emphysema 7 1.27 1 0.06 8 0.35
Lymphangioleiomyomatosis 0 0.00 2 0.12 2 0.09
Obliterative bronchiolitis (not transplant related) 5 0.90 3 0.17 8 0.35
Other vasculitides incl. microscopic polyangiitis 1 0.18 7 0.40 8 0.35
Primary ciliary dyskinesia 4 0.72 2 0.12 6 0.26
Pulmonary alveolar proteinosis 3 0.54 5 0.29 8 0.35
Pulmonary amyloidosis 0 0.00 1 0.06 1 0.04
Tracheo-oesophageal fistula 4 0.72 1 0.06 5 0.22
Granulomatosis with polyangiitis 2 0.36 7 0.40 9 0.39
Totals 71 12.82 115 6.65 186 8.13