Wednesday, July 26, 2017

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There are currently four PHT related registries open for enrolment across Australia & New Zealand.

ANZ CHD & PAH Registry



Our aim is to identify the majority of CHD and PAH patients in Australia and New Zealand for the Registry.

Please participate to help us advance our knowledge of these diseases and ensure the project is a success.

If you have 3 or more patients whom you think would qualify, please consider contacting us to allow us to enter their data in the ANZ CHD and PAH registry.

NSW: Prof. David Celermajer

david.celermajer@email.cs.nsw.gov.au

Royal Prince Alfred Hospital, Department of Cardiology, Missenden Road, Camperdown, NSW

QLD: Dr. Fiona Kermeen

Fiona_Kermeen@health.qld.gov.au

The Prince Charles Hospital, Pulmonary Vascular Disease Unit, Chermside, QLD

VIC: A/Prof. Leanne Grigg

Leeanne.Grigg@mh.org.au

Royal Melbourne Hospital, Department of Cardiology, Melbourne, VIC

SA: Dr. Patrick Disney

pdisney@internode.on.net

Royal Adelaide Hospital, Department of Cardiology, Adelaide, SA

WA: Dr. Andrew Bullock

Andrew.Bullock@health.wa.gov.au

Children’s Cardiac Centre, Princess Margaret Hospital

Adult Congenital Heart Disease Clinic, Royal Perth Hospital, Perth WA

NZ: Dr. Clare O’Donnell

ClareOD@adhb.govt.nz

Paediatric/Adult Congenital Cardiologist, Auckland City Hospital, Auckland NZ

Contact the participating centre nearest to you or email the database manager at

Geoff@mozaicsolutions.com.au or on 0422 308 585


ANZ Pulmonary Hypertension Registry




The PHSANZ bi national PHT registry now has ethics approval in 11 centres across Australia and New Zeeland.
With more than 750 patients entered, it is proving a very valuable tool for collective bargaining and resource allocation.

The registry is designed to make your clinic life run more efficiently with some invaluable clinical toolds as well as being research oriented.

The PHSANZ is funding nursing resources to provide assistance in data entry and providing a clinically useful tool with individual chronological patient summary reports.

For more information on the PHT registry and how to become involved please contact any of the coordinators;


Leanne Cann
leanne.cann@bigpond.com
 
Carol Corrigan
ccorrigan@stvincents.com.au
 
Peta King
petamichelle.king@health.sa.gov.au

Geoff Strange
geoff.strange@phsanz.com.au
 


ASCS Scleroderma PAH database




The ASCS was established in 2006 by the Australian Scleroderma Interest Group, made up of rheumatologists, respiratory physicians and cardiologists with an interest in systemic sclerosis. The aim is to provide a comprehensive screening service for the cardiopulmonary complications of SSc, especially pulmonary hypertension and interstitial lung disease. Twelve centres from around Australia offer this service. If patients consent, they are enrolled in the ASCS, and data is collated directly into a custom-made on-line database, accessible from anywhere. A decision support system advises when further investigations are required. A biobank of sera and DNA samples has been established.

Australian Scleroderma Screening Centres.

Western Australia
ROYAL PERTH
Janet Roddy & Madelynn Chan
Ph: 08 9224 1310
 
Queensland
SUNSHINE COAST RHEUMATOLOGY,
MAROOCHYDORE
Peter Nash & Louisa Voight
Ph: 07 5443 1033
 
New South Wales
JOHN HUNTER, NEWCASTLE
Gabor Major & Glenn Reeves
Ph: 024921 3000
 
ROYAL NORTH SHORE
Les Schrieber
Ph: 02 9926 7351
 
St. GEORGE SYDNEY
Allan Sturgess
Ph: 02 9113 2670
 
ROYAL PRINCE ALFRED
Peter Youssef
Ph: 02 9515 9337

Australian Capital Territory
CANBERRA RHEUMATOLOGY
Kathie Tymms
Ph: 0437 595 334
 
Victoria
St. VINCENT’s
Wendy Stevens &
Mandana Nikpour
Ph: 03 9288 3983
 
MONASH MEDICAL CENTRE
Joanne Sahhar
Ph: 03 9594 3566
 
Tasmania
MENZIES RESEARCH INSTITUTE
Jane Zochling
Ph: 03 6226 7776
 
South Australia
ROYAL ADELAIDE
Susanna Proudman (ASIG Chair)
Ph: 08 8222 5190
 
QUEEN ELIZABETH
Catherine Hill
Ph: 08 8222 6688

Australian Idiopathic Pulmonary Fibrosis (IPF) Registry


Rationale - Why develop an Australian IPF Registry now?

High resolution computed tomography scanning has lead to earlier diagnosis of IPF, providing physicians with the opportunity of 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.


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.

You will have the opportunity to learn more with expert specialists providing feedback on each of your patients.

How can I be involved?

Eligible participants are those patients with a clinical diagnosis of IPF who are able to complete a 30-minute questionnaire. A surgical biopsy is not necessary for referral.

To find the IPF Registry Coordinator in your State contact the Australian IPF Registry Project Manager Sacha Macansh by telephone 02 9515 3996 or by email at sacha@lungfoundation.com.au.


Copyright 2011 by PHSANZ