Australian IPF Registry research looks at quality of life in those with IPF
Little is known about Idiopathic Pulmonary Fibrosis (IPF) and the impacts of this debilitating and complex lung disease. To improve our understanding, Australian IPF Registry participants generously contribute information about their health every six months so that it can be used to undertake a wide range of research projects.
Recently an important study using this information was published titled, Health-related quality of life in Idiopathic Pulmonary Fibrosis: Data from the Australian IPF Registry. Access to the registry data was valuable as researchers, could for the first time, analyse the impacts on quality of life in a large population by looking at data from more than 650 participants. During the two and a half year study period, one-third of these registry participants experienced a clinically meaningful decrease in their quality of life, at the same time as their lung function decreased. The researchers found that in those with IPF, quality of life is most strongly impacted by shortness of breath, although cough and depression are also involved.
This research, using the Australian IPF Registry data, is important as it can be used to improve practice and the management of IPF to help ensure that clinicians understand that as well as aiming to maintain respiratory function, it is important to address symptoms such as shortness of breath, cough and depression to improve the quality of life of their patients.
IPF clinical trials
In addition to research, the Australian IPF Registry aims to maximise recruitment into IPF clinical trials, and so support the development of novel therapies. A summary of the IPF clinical trials currently recruiting in Australia can be found at http://lungfoundation.com.au/patient-support/rarelung/idiopathic-pulmonary-fibrosis-ipf/.
Health professionals can also find a list of Registry Coordinators in each state at http://lungfoundation.com.au/health-professionals/idiopathic-pulmonary-fibrosis-registry/ or call Sacha Macansh on 02 9515 3996 or email firstname.lastname@example.org.