Australian Idiopathic Pulmonary Fibrosis Registry: Vital lessons from a national prospective collaborative project

Abstract

There is little Australian epidemiologic data on idiopathic pulmonary fibrosis (IPF), a relatively uncommon but devastating disease. The vast geographic distances in Australia have been a major impediment for collaborative research into IPF. A collaborative national effort, the Australian IPF Registry, has been formed, launched and is recruiting successfully (n = 359, January 2014). Our experience provides unique insights for others wishing to set up IPF registries and in time for a global IPF registry.

Determinants and outcomes of prolonged anxiety and depression in idiopathic pulmonary fibrosis

“…Anxiety and depression were not related to physiological parameters; however, dyspnoea and number of comorbidities were important contributors. The aims of this study were to determine the frequency of prolonged anxiety and depression among sufferers of idiopathic pulmonary fibrosis (IPF), and factors contributing to their persistence.Using the Australian IPF Registry, we obtained data from all individuals who had completed the self-reported Hospital Anxiety and Depression Scale (HADS) at baseline and at 12 months of follow-up [2,3]. HADS scores were classified according to standard criteria where a score >10 indicates a probable case of clinically significant anxiety or depression and a score of 8-10 indicates borderline probability.…”

“…Using the Australian IPF Registry, we obtained data from all individuals who had completed the self-reported Hospital Anxiety and Depression Scale (HADS) at baseline and at 12 months of follow-up [2,3]. HADS scores were classified according to standard criteria where a score >10 indicates a probable case of clinically significant anxiety or depression and a score of 8-10 indicates borderline probability.…”

Best supportive care for idiopathic pulmonary fibrosis: current gaps and future directions

“…Although the same methodological problems are present with real-life data, national registries are already implementing the measurement of QoL in patients with IPF [45,86,[93][94][95], and this approach will allow the collection of prospective data on the clinical history of the disease and will offer the possibility to explore the long-term effect of several interventions on QoL. One example is the recent report on QoL in the German INSIGHTS-IPF registry [86].…”

Insights into idiopathic pulmonary fibrosis in the real world

“…However, cohorts face many challenges and represent a major collective effort [21][22][23][24][25]. As there is currently a momentum to create registries at the national level in multiple countries [26], stakeholders should endeavour to share methodology with INSIGHTS-IPF so that data can be eventually combined, aiming at expand on an international global registry [16,17]. One further challenge will be to develop multicentre repositories of biological samples that are linked to prospective clinical cohorts, as recently emphasised [27,28] and have already been initiated in the European IPF network initiative [16,29].…”