Interstitial/Rare Lung Diseases

Interstitial lung diseases (ILD) are a group of rare lung conditions that cause chronic breathlessness. The problem usually develops over the age of 50 years, and can affect both men and women, and also children. Generally the causes of these diseases are unknown. Only very rarely are ILDs inherited. They are not contagious.

The lungs are responsible for the delivery of oxygen into the blood stream and the removal of carbon dioxide. The major problem in ILD is inflammation of the lung tissue which leads to scarring (fibrosis) of the air sacs (alveoli) that interferes with the ability of the lungs to deliver oxygen. If the problem gets worse, the lungs become stiff, and shrink resulting in increased breathlessness.

In order to gain a better understanding of the incidence and prevalence of Interstitial lung disease Lung Foundation Australia and the Thoracic Society of Australia and New Zealand (TSANZ) developed the Australasian Registry Network for Orphan Lung Disease (ARNOLD).

Australasian Registry Network for Orphan Lung Disease (ARNOLD)

Officially launched in November 2008 and completed in February 2015, the Australian Registry Network for Orphan Lung Disease (ARNOLD) was developed in consultation with key opinion leaders in interstitial and orphan lung disease in Australasia, as well as Lung Foundation Australia and the Thoracic Society of Australia and New Zealand (TSANZ) The aim of this ground-breaking initiative was to  capture the incidence and prevalence of interstitial and orphan lung diseases in Australasia in order to raise the profile of these diseases, increase understanding of what causes them and encourage studies of new treatments.

An ARNOLD website was created to provide physicians with a simple email/web-based method for recording monthly incidence data on orphan lung diseases and idiopathic pulmonary fibrosis. The website also included information pages for patients and health professionals about the different lung diseases. With the ARNOLD project now completed the ARNOLD website was closed down but the information pages have been relocated to the Lung Foundation website: www.lungfoundation.com.au and can be found here.

Prior to the ARNOLD project Australasia did not have an accurate picture of the number of patients suffering from orphan lung diseases, defined as diseases with a prevalence of less than 1 in 2,000.  Approximately 7,000 rare lung diseases have been identified worldwide.

Data collected during the five years the ARNOLD program was operational focused on pre-determined lists of adult and paediatric orphan lung diseases and the results have been most beneficial. For example, the ARNOLD project was a precursor to the successful Australian Idiopathic Pulmonary Fibrosis Regisry, an initiative of the Lung Foundation and the five years of data collected will be written up for prevalence data.

You can view the lung disease information pages taken from ARNOLD here and for more information on ARNOLD please feel free to contact our Information and Support Team at enquiries@lungfoundation.com.au or by phone on 1800 654 301.

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