Idiopathic Pulmonary Fibrosis Registry

The Australian IPF Registry has been established by Lung Foundation Australia and is now recruiting.

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 an unrestricted educational grant by InterMune.

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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. The Pulmonary Interstitial Vascular Organisation Taskforce (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 will an 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.

Now recruiting

The Australian IPF Registry is currently recruiting participants in all States. Registry Coordinators in each State will facilitate participant consent and the data collection process with statewide ethics approval in every State, except WA where individual institutions are providing approval.

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.

Registry Coordinators

NSW & ACTRobert Henson02 9515 4018Email Robert
SASarah Richards08 8222 4244 Email Sarah
VICKaren Symons03 9076 6963Email Karen
QLDSacha Macansh02 9515 3996Email Sacha
WASvetlana Baltic08 6151 0890 Email Svetlana
TASHeather Chaplin03 6226 4790Email Heather
NationalSacha Macansh02 9515 3996Email Sacha

For more information please call Sacha Macansh on 02 9515 3996 or email.

How can health professionals be involved?

  1. Identify and recruit Registry participants – Inform eligible participants about the Registry and contact the Registry Coordinator in your State.
  2. 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.

To join contact the Registry Project Manager

Research

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 please contact the Registry Project Manager.

Publications

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).

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

http://www.thoracic.org/statements/insterstitial-lung-disease.php

 

Contact

Project manager – Sacha Macansh
Telephone: +61 (0)2 9515 3996
Facsimile: +61 (0)2 9515 8196
Email: sacha@lungfoundation.com.au

 

 

The Australian IPF Registry is proudly sponsored by:
Foundation Partners
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An initiative of:

 

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.

 

The Australian IPF Registry gratefully acknowledges the in- kind support of:

Alfred Research and Education Resources (ARER), NSW

Alfred Health, Melbourne, Victoria

Central Adelaide Local Health Network Inc. Royal Adelaide Hospital

Institute for Respiratory Health, WA

The Prince Charles Hospital, Metro North Health Service District, Queensland Health

Royal Prince Alfred Hospital, Camperdown NSW

University of Tasmania, Hobart, TAS.

University of Queensland, Northside Clinical School, The Prince Charles Hospital, QLD