{"id":802,"date":"2018-09-13T10:30:37","date_gmt":"2018-09-13T00:30:37","guid":{"rendered":"https:\/\/lungfoundation.com.au\/?page_id=802"},"modified":"2023-12-22T11:53:19","modified_gmt":"2023-12-22T01:53:19","slug":"australian-ipf-registry","status":"publish","type":"page","link":"https:\/\/lungfoundation.com.au\/research\/our-research\/australian-ipf-registry\/","title":{"rendered":"Australian IPF Registry"},"content":{"rendered":"","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":3359,"parent":763,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-802","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Australian IPF Registry - Lung Foundation Australia<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lungfoundation.com.au\/research\/our-research\/australian-ipf-registry\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Australian IPF Registry - 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This rich research platform supported a wide range of projects, with peer reviewed publications across epidemiology, prognostic indicators including biomarkers and artificial intelligence using HRCT scans, health economics, and genetic studies. The research using AIPFR data has contributed to an improved understanding of the complex disease IPF and thereby improved management and outcomes for people living with IPF.<\/p>\n<p>This unique research platform including extensive data, HRCT scans and blood samples, continues to be available for research and under management of the AILDR team. To learn more or to investigate access to Australian IPF Registry data for research visit the website by clicking on the button below.<\/p>\n","link":{"title":"Know more","url":"https:\/\/www.sydney.edu.au\/medicine-health\/our-research\/research-centres\/aildr.html","target":""}},{"acf_fc_layout":"featured_posts_static","heading":"Featured resources","view_more_link":"","posts":[{"ID":2003,"post_author":"12","post_date":"2017-11-03 13:51:18","post_date_gmt":"2017-11-03 03:51:18","post_content":"A recent study published by the European Respiratory Journal based on the Australian Idiopathic Pulmonary Fibrosis (IPF) Registry data looked at the frequency of prolonged anxiety and depression among people living with IPF, and factors contributing to their persistence. The research found a substantial number of participants had symptoms of anxiety and depression. Often the people who had anxiety and depression also had significant breathlessness and cough. The researchers were surprised by the significant proportion of participants who had mood related symptoms at the start, and who also had persistent symptoms 12 months later.\r\n\r\nIf you have IPF or are caring for someone with IPF, and are experiencing significant breathlessness and cough, it is important to talk to your health professional, particularly if you are feeling any anxiety or depression. Your health professional will talk to you about treatments available, including medications and psychological or cognitive therapies.\r\n<h4>IPF signs, symptoms and support<\/h4>\r\nSeptember marked Global Pulmonary Fibrosis Awareness Month and Lung Foundation Australia raised awareness about (IPF) and the signs, symptoms\u00a0and support for this rare and debilitating disease. These include shortness of breath, a cough that doesn\u2019t go away, feeling tired all the time and clubbing of fingernails and toenails.\r\n\r\nFind out more at <strong><a href=\"https:\/\/lungfoundation.com.au\/IPF\">lungfoundation.com.au\/IPF<\/a>.<\/strong>","post_title":"New IPF Registry research","post_excerpt":"","post_status":"publish","comment_status":"open","ping_status":"closed","post_password":"","post_name":"new-ipf-registry-research","to_ping":"","pinged":"","post_modified":"2020-11-18 22:02:31","post_modified_gmt":"2020-11-18 12:02:31","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=article&#038;p=2003","menu_order":0,"post_type":"article","post_mime_type":"","comment_count":"0","filter":"raw"},{"ID":836,"post_author":"12","post_date":"2017-12-04 12:05:19","post_date_gmt":"2017-12-04 02:05:19","post_content":"A position statement published in the <em>Medical Journal of Australia<\/em> has defined advances in diagnostic techniques and new antifibrotic medications as a promising time for people living with the incurable and debilitating lung disease, Idiopathic Pulmonary Fibrosis (IPF).\r\n\r\nIPF causes irreversible scarring of the lungs, which worsens over time, making it difficult to breathe. According to the position statement, developed by Lung Foundation Australia and Thoracic Society of Australia and New Zealand, IPF carries a universally poor prognosis with the average survival post diagnosis only 2-5 years and until recently, there were no effective therapies available.\r\n\r\nRespiratory Physician and lead author of the statement, Dr Helen Jo, said treatment has previously been limited to lung transplantation in suitable patients, however two landmark clinical trials in 2014 have for the first time supported the use of antifibrotic medication (pirfenidone and nintedanib) in patients with mild or moderate IPF.\r\n\r\n\u201cThe biggest challenge for doctors is accurately diagnosing IPF, because many of its symptoms are similar to other interstitial lung diseases. These include breathlessness, a dry cough that doesn\u2019t go away, fatigue and clubbing of the fingernails and toenails,\u201d Dr Jo said.\r\n\r\n\u201cAccurately diagnosing IPF is critically important, given the positive outcomes with correct use of antifibrotic therapies in a subgroup of patients.\r\n\r\n\u201cThe next decade will see further evolution such as advances in high resolution computed tomography technology, newer methods of sampling lung tissue, biomarkers and genetic testing, which will refine the diagnostic process, improve our ability to provide prognosis for patients, and further optimise and personalise management pathways,\u201d she said.\r\n\r\nBill van Nierop, who was diagnosed with IPF in 2015, said the recent advances in IPF treatment have given him hope.\r\n\r\n\u201cAs a result of being diagnosed by coincidence, and at such an early stage, I was able to start taking one of the new drugs, which aims to slow the progression of IPF by up to 50 per cent. This was the first time I had really experienced any encouragement or hope since I was diagnosed,\u201d Mr Van Nierop said.\r\n\r\nIn addition to these new treatments, the management of comorbidities and use of non-pharmacological therapies such as oxygen supplementation, pulmonary rehabilitation, lung transplantation and palliative measures remain vital to the quality of life of people with IPF.\r\n\r\n\u201cIt is an exciting time in the history of IPF, with significant advances in the management of this condition but there is still more to be done. Further research into the treatment and management of people with severe IPF is still needed as there are currently very little controlled data to guide treatment for these patients,\u201d Dr Jo said.\r\n\r\n\u201cIPF remains a fatal condition \u2013 further research is critical to saving lives,\u201d Dr Jo said.\r\n\r\nFor the full position statement from Lung Foundation Australia and Thoracic Society of Australia and New Zealand,\u00a0<strong><a href=\"https:\/\/lungfoundation.com.au\/health-professionals\/guidelines\/\">here<\/a><\/strong>.\r\n\r\nThe <em>Medical Journal of Australia<\/em> is a publication of the Australian Medical Association.\r\n<h3>Lung Foundation Australia IPF initiatives:<\/h3>\r\n<ul>\r\n \t<li><strong>Australian IPF Registry:<\/strong> Our IPF Registry provides a unique platform that collects information on patients throughout the country which researchers use to help us better understand this serious and complex disease.<\/li>\r\n \t<li><strong>Resources and Support Services: <\/strong>These include an infographic highlighting the signs, symptoms and support for IPF and Pulmonary Fibrosis Peer Connect which matches people living with IPF and their care givers with someone going through a similar experience.<\/li>\r\n<\/ul>\r\nFind out more, <strong><a href=\"https:\/\/lungfoundation.com.au\/IPF\">here.<\/a>\u00a0<\/strong>","post_title":"Promising time for Pulmonary Fibrosis patients","post_excerpt":"","post_status":"publish","comment_status":"open","ping_status":"closed","post_password":"","post_name":"promising-time-for-pulmonary-fibrosis-patients","to_ping":"","pinged":"","post_modified":"2018-11-16 15:45:47","post_modified_gmt":"2018-11-16 05:45:47","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=article&#038;p=836","menu_order":0,"post_type":"article","post_mime_type":"","comment_count":"0","filter":"raw"},{"ID":351,"post_author":"3","post_date":"2018-09-17 16:34:28","post_date_gmt":"2018-09-17 06:34:28","post_content":"<!-- wp:paragraph -->\n<p>This toolkit has been developed in collaboration with the Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF). <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>It contains material designed to aid in the presentation and discussion of cases presented at Interstitial Lung Disease (ILD) multidisciplinary meetings (MDM). <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Content can be downloaded and saved for local use or used as an example to aid in the preparation of individualised templates. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>This resource is part of an ILD MDM package that can be accessed <a href=\"https:\/\/lungfoundation.com.au\/health-professionals\/clinical-information\/interstitial-lung-disease-toolkit\/\">here<\/a>. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>For further information contact our<a href=\"https:\/\/lungfoundation.com.au\/patients-carers\/support-services\/support\/\"> Information and Support centre <\/a>on <a href=\"Tel:1800654301\">1800 654 301<\/a>.<\/p>\n<!-- \/wp:paragraph -->","post_title":"ILD MDM toolkit guide","post_excerpt":"","post_status":"publish","comment_status":"open","ping_status":"closed","post_password":"","post_name":"ild-mdm-toolkit-guide","to_ping":"","pinged":"","post_modified":"2021-03-15 16:38:53","post_modified_gmt":"2021-03-15 06:38:53","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=resource&#038;p=351","menu_order":0,"post_type":"resource","post_mime_type":"","comment_count":"0","filter":"raw"}]},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3>Acknowledgements<\/h3>\n<p>The Rare Lung Disease National Advisory Committee (previously known as PIVOT) provides overarching governance to the Registry. A global network has been established with support from the Royal Brompton Hospital in the UK and the University of California, San Francisco in the USA. Registry data sets have been designed specifically to complement and build on the experience and expertise of these recognised international centres. The work of the Australian IPF Registry has been made possible through the generous support of a number of philanthropic families and the Royal Hobart Hospital Research Foundation. Financial support for the Australian IPF Registry is also proudly provided in the form of an unrestricted educational grant.<\/p>\n","link":""},{"acf_fc_layout":"sponsor_block","heading":"The Australian IPF Registry is supported by","tiers":[{"tier_text":"Foundation sponsor","logos":[{"logo_image":{"ID":855,"id":855,"title":"biLogo(HiRes)","filename":"biLogoHiRes.png","filesize":217503,"url":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/biLogoHiRes.png","link":"https:\/\/lungfoundation.com.au\/research\/our-research\/australian-ipf-registry\/bilogohires\/","alt":"","author":"3","description":"","caption":"","name":"bilogohires","status":"inherit","uploaded_to":802,"date":"2018-09-13 03:48:54","modified":"2018-09-13 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