Australian Idiopathic Pulmonary Fibrosis Registry
What is IPF?
Idiopathic Pulmonary Fibrosis, commonly shortened to IPF, is a condition that causes persistent and progressive scarring of the tiny air sacs (alveoli) in the lungs. Click here to find out more about IPF.
Why develop an Australian IPF Registry?
High resolution computed tomography scanning has led to earlier diagnosis of IPF, providing physicians with the potential for early intervention of this severe and complex lung condition. As a rare lung disease no single Australian centre has an adequate patient population to facilitate robust research.
How has the Australian IPF Registry been developed?
Lung Foundation Australia has established the Australian IPF Registry with 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 unrestricted educational grants by various sponsors (see acknowledgment section below).
Above: Australian IPF Registry Steering Committee members. From L to R. Back Haydn Walters, Richard Wood-Baker, Chris Zappala, Samantha Ellis, Peter Hopkins , and front, Yuben Moodley, Ian Glaspole, Sacha Macansh (secretariat), Sally Chapman, Annabelle Mahar, Tamera Corte, Nicole Goh. Registry Steering Committee members not in photo are Paul Reynolds, William Darbishire and Wendy Cooper.
An expert team of Principal Investigators from every State and other Steering Committee members have developed the Australian IPF Registry, together with the Lung Foundation Australia. The Rare Lung Disease National Advisory Committee (previously known as PIVOT) provides over arching 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.
What benefits does the Australian IPF Registry provide?
The Australian IPF Registry provides many benefits:
- A unique platform for epidemiological and clinical research
- Improved recruitment into clinical trials
- Increased IPF disease awareness and improved tertiary referral
- Improved patient understanding and support networks
- Improved Australian and international IPF research collaboration
- Expert specialists provide feedback on HRCT scans and/or surgical biopsy slides.
The Australian IPF Registry is currently recruiting participants in all States.
Eligible participants are those patients with a clinical diagnosis of IPF and who are able to complete a 30-minute questionnaire. A surgical biopsy is not necessary for referral.
Please advise any potential participants of the Registry then contact the Coordinator in your State.
|NSW & ACT||Robert Henson||02 9515 4018||Email Robert|
|QLD||Sacha Macansh||02 9515 3996||Email Sacha|
|SA||Alysha Riley||08 8222 4244||Email Alysha|
|TAS||Heather Chaplin||03 6226 4790||Email Heather|
|VIC||Karen Symons||03 9076 6963||Email Karen|
|WA||Sacha Macansh||02 9515 3996||Email Sacha|
|NT||Sacha Macansh||02 9515 3996||Email Sacha|
For more information please call Sacha Macansh on 02 9515 3996 or email.
How can health professionals be involved?
- Identify and recruit Registry participants – Inform eligible participants about the Registry and contact the Registry Coordinator in your State.
- Join AUS IPF-net – the AUS IPF-net is a special interest group for all health professionals and researchers established by the Registry. As a member you will:
- Receive regular e-newsletters keeping you up to date with:
- Registry progress and research findings
- IPF trials that may be of interest to your patients
- Global studies and new findings on IPF.
- Be invited to symposia and meetings on IPF and Interstitial Lung Disease.
Creating the Australian IPF Registry establishes a unique research resource for all clinical and research collaborators. During the initial project period the Registry expects to expand to 700 patients. Registry data may potentially be used to address a number of types of research questions in epidemiology, medical and drug trial research.
In the future tissue studies are planned. All patients are currently being consented for a blood sub-study and funding to support this initiative is being sought.
The Registry Steering Committee is keen to consider applications to use Registry data for research.
For further information on this process or for a copy of the Registry publications policy please contact the Registry Project Manager.
Respirology (2014) 19, 1088–1091
Australian Idiopathic Pulmonary Fibrosis Registry: Vital lessons from a national prospective collaborative project.
Moodley, Y., Goh, N., Glaspole, I., Macansh, S., Walters, ES., Chapman, S., Hopkins, P., Reynolds, PN., Zappala, C., Cooper, W., Mahar, A., Ellis, S., McCormack, S., Darbishire, W., Wood-Baker, R., Corte, TJ. (For the Australian IPF Registry Steering Committee).
Respirology (2017) doi: 10.1111/resp.12989
Health-related quality of life in idiopathic pulmonary fibrosis: Data from the Australian IPF Registry
Glaspole I.N, Chapman S.A., Cooper W.A., Ellis S.J., Goh N.S., Hopkins P.M, Macansh S., Mahar A., Moodley Y.P., Reynolds P.N., Walters E.H., Zappala C.J. and Corte T.J.
European Respiratory Journal (2017) 49 1601592
Baseline characteristics of idiopathic pulmonary fibrosis: analysis from the Australian Idiopathic Pulmonary Fibrosis Registry
Jo H.E, Glaspole I., Grainge C., Goh N., Hopkins P.M.A, Moodley Y., Reynolds P.N., Chapman, S.E. Walters H.E, Zappala C., Allan A., Keir G.J., Hayen A., Cooper W.A., Mahar A.M, Ellis S., Macansh S., and Tamera J. Corte
Useful IPF References and Guidelines
American Journal of Respiratory and Critical Care Medicine Volume 192 Number 2, pp 238-248, Jul 15, 2015
An Official ATS/ERS/JRS/ALAT Clinical Practice Guideline: Treatment of Idiopathic Pulmonary Fibrosis: Executive Summary An Update of the 2011 Clinical Practice Guideline
Raghu G., Rochwerg B., Zhang Y., Cuello Garcia CA., Azuma A., Behr J., Brozek JL., Collard HR., Cunningham W., Homma S., Johkoh T., Martinez FJ., Myers J., Protzko SL., Richeldi L., Rind D., Selman M., Theodore A., Wells AU., Hoogsteden H., and Schunemann HS; on behalf of the ATS, ERS, JRS, and ALAT
Project manager – Sacha Macansh
Telephone: +61 (0)2 9515 3996
Facsimile: +61 (0)2 9515 8196
|The Australian IPF Registry is proudly sponsored by:|
|An initiative of:|
Rare Lung Disease National Advisory Committee (previously known as PIVOT)
Lung Foundation Australia would also like to acknowledge and thank the Royal Hobart Hospital Research Foundation for its generous support in establishing the Australian IPF Registry alongside the members of the Registry Radiology and Histopathology review panels.
The Australian IPF Registry gratefully acknowledges the in- kind support of:
Alfred Medical Imaging, NSW
Alfred Health, Melbourne, Victoria
Central Adelaide Local Health Network Inc. Royal Adelaide Hospital
Institute for Respiratory Health, WA
Royal Prince Alfred Hospital, Camperdown NSW
University of Tasmania, Hobart, TAS.
The Australian IPF Registry gratefully acknowledges the generous contribution of the members of the Registry Radiology and Histopathology review panels.
Radiology Review panel
|Dr Samantha Ellis|
|Dr Samuel R. McCormack|
|Dr Stefan B. Heinze|
|Dr Anne Miller|
|Dr Bernard Ng|
|Dr Hannah C. Rouse|
Histopathology Review panel
|A/Professor Wendy Cooper|
|Dr Annabelle M. Mahar|
|Dr Edwina Duhig|
|Dr David B. Godbolt|
|Professor Douglas Henderson|
|A/Professor Sonja Klebe|