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

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

Disease	Paediatric		Adult		Total population
Disease	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

ISSN: 1750-1172