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ANZ CHD & PAH registry
PHT Bi National Registry
IPF Registry
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ANZ CHD&PAH Registry


Building the ANZ CHD & PAH Registry

Novel treatment options have recently become available for CHD / Eisenmenger patients and those with other forms of Pulmonary Arterial Hypertension (PAH) complicating Congenital Heart Disease (CHD), therefore, for the first time, medical practitioners across Australia and New Zealand are being asked to describe patients with CHD and PAH. The ANZ CHD and PAH registry is capturing epidemiological data with the goal of improving our knowledge and sharing information for better patient outcomes.

Charting Patients, Incidence & Treatment

The main aim of the registry is to capture details about patients with any Congenital Heart Disease and Pulmonary Arterial Hypertension. The registry will provide researchers with improved knowledge as to the scope of disease, patient information and insights into current practices.

A publication of the interim results has been published in the Journal of Internal Medicine (Rose et al 2012) and can be viewed by clicking here

How do I participate?

Enrolment is still open untill the end of 2012 to eligible patients and currently there are 275 patients with CHD and PAH enrolled into the database. If you would like more information regarding patient enrolment, eligibility criteria and participating centres please contact the database administrator and CEO of PHSANZ, Geoff Strange or refer to our website for full contact details of the various centres.

Mobile: 0422 308 585

PHSANZ bi national PHT registry

The PHSANZ bi national PHT registry now has ethics approval in 11 centres across Australia and New Zealand.

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 as listed on our website

Australian Scleroderma Cohort Study

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.

The project is co-ordinated by a Project Officer. Candice Rabusa who is based at St Vincent’s Hospital in Melbourne. Candice can be contacted on

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

Contact Us
Mr Geoff Strange CEO
Phone: 0422 308 585

PHSANZ Annual Scientific Meeting
November 16th 2012, Sydney NSW
Click Here to Register Now!

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