title: Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.
abstract: BACKGROUND
  We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand.
  
  
  METHODS
  A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics.
  
  
  RESULTS
  Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported.
  
  
  CONCLUSIONS
  A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.
authors.affiliation: Sydney Children's Hospitals Network, Sydney, Australia. Frauleinkarly@gmail.com.
authors.forename: K
authors.initials: K
authors.lastname: Casamento
authors.affiliation: Great Ormond Street Hospital for Children NHS Foundation Trust, London, England.
authors.forename: A
authors.initials: A
authors.lastname: Laverty
authors.affiliation: Auckland District Health Board, Auckland, New Zealand.
authors.forename: M
authors.initials: M
authors.lastname: Wilsher
authors.affiliation: Starship Children's Health, Grafton, Auckland, New Zealand.
authors.forename: J
authors.initials: J
authors.lastname: Twiss
authors.affiliation: Institute for Health Research, University of Notre Dame, Fremantle, WA, Australia.
authors.forename: E
authors.initials: E
authors.lastname: Gabbay
authors.affiliation: Alfred Hospital, Melbourne, Australia.|Monash University, Melbourne, Australia.
authors.forename: I
authors.initials: I
authors.lastname: Glaspole
authors.affiliation: School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia.|Department of Respiratory Medicine, Sydney Children's Hospital Randwick, Sydney, NSW, Australia.
authors.forename: A
authors.initials: A
authors.lastname: Jaffe
mesh_terms: D001315:Australia; D006801:Humans; D008171:Lung Diseases / Q000453:epidemiology*; D009520:New Zealand; D015995:Prevalence; D035583:Rare Diseases / Q000453:epidemiology*; D012042:Registries
keywords: Australia; Lung disease; New Zealand; Prevalence; Rare diseases; Registries