Orphan lung disease Australia
An Australian Idiopathic Pulmonary Fibrosis Registry is currently under development and It is anticipated that the registry will start recruiting in early 2012.
Idiopathic pulmonary fibrosis (IPF) is a complex lung condition with progressive and severe scarring of the lung tissue. Despite the increase in incidence in IPF over the last 10 years, it has not been possible to study patients with IPF in Australia (except via enrolment in international pharmaceutical company sponsored trials), as no single centre has an adequate patient population with IPF. The Australian IPF Registry addresses this challenge by facilitating national and international collaboration to provide quality data to answer clinical and epidemiological research questions, and ultimately lead to better quality of care for IPF patients.
The Australian IPF Registry has been established building on the foundation of Menzies Research Institute in Hobart and the expertise of specialist centres in every State. Capitalising on the established ties with recognised global centres the Registry has benefited from their knowledge and proficiencies. Developing these networks also provides the opportunity for the Registry to foster and facilitate ongoing national and international research and collaboration.
Registry seed funding and governance have been established. A project manager has been recruited together with the eastern State Coordinators. Ethics approvals in many States together with developing the remote access database ensured that the Registry has met initial milestones in a timely manner. With strategies for communication to and engaging with clinicians and health professionals nationally and activity focused on attracting further funding underway, the Registry is well placed to realise the full value and capacity of the current project and potential future growth. Using this unique opportunity to study IPF patients to realise the project aims will improve understanding of the disease, potential treatments and raise both physician and consumer awareness.
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