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Full-Text Articles in Medicine and Health Sciences
Assessing The Feasibility Of A Web-Based Registry For Multiple Orphan Lung Diseases: The Australasian Registry Network For Orphan Lung Disease (Arnold) Experience, K Casamento, A Laverty, M Wilsher, J Twiss, E Gabbay, I Glaspole, A Jaffe
Assessing The Feasibility Of A Web-Based Registry For Multiple Orphan Lung Diseases: The Australasian Registry Network For Orphan Lung Disease (Arnold) Experience, K Casamento, A Laverty, M Wilsher, J Twiss, E Gabbay, I Glaspole, A Jaffe
Medical Papers and Journal Articles
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 …