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ACSQHC-ARCR-480

Prioritised clinical domain
Nil
Abbreviation
ABR
Registry contact

A/Prof Lucy Morgan, Macquarie University, abr@lungfoundation.com.au

Year established
2015
Description

The Australian Bronchiectasis Registry (ABR) was established in 2015 by Lung Foundation Australia (LFA) and the Australasian Bronchiectasis Consortium (ABC), an independent steering committee composed of Australia’s and New Zealand’s leading respiratory physicians with experience, interest and skill in both clinical management and research.

The principal aim of the registry is to identify and collect longitudinal health information on patients with non-cystic fibrosis bronchiectasis in order to facilitate epidemiological research, improve clinical care and maximise opportunities for patients to participate in clinical trials. The registry has international collaborations with US, European and New Zealand researchers to build on the existing evidence base, leverage knowledge, expertise, protocols, and ideas in order to optimise research outcomes through international sharing of data.

Reporting process
  • Reported in public reports
  • Shared with clinicians
  • Shared with consumers
  • Feedback to contributing clinicians
  • Reported to State/Territory health departments on request
Patient Reported Outcome Measures (PROMs)

QoL-B, Bronchiectasis Health Questionnaire (BHQ) is pending inclusion in upcoming data dictionary update

Patient Reported Experience Measures (PREMs)

Nil

Participating sites

New South Wales

  • Concord Repatriation General Hospital 
  • Wyong Hospital 
  • Westmead Hospital 
  • Royal Prince Alfred Hospital 
  • Sydney's Children's Hospital, Randwick 

Victoria

  • Monash Medical Centre 
  • Royal Melbourne Hospital V
  • Western Health Footscray Hospital 
  • The Royal Children's Hospital Melbourne 

Queensland

  • The Prince Charles Hospital 
  • Queensland Children's Hospital (formerly Lady Cilento Children's Hospital) 
  • Mater Misericordiae Ltd, South Brisbane 
  • Greenslopes Private Hospital 

South Australia

  • Royal Adelaide Hospital 

Western Australia

  • Royal Perth Hospital WA

Northern Territory 

  • Alice Springs Hospital 
  • Royal Darwin Hospital/Menzies School of Health Research
Condition
Bronchiectasis
Name
Australian Bronchiectasis Registry
Lead organisation
Lung Foundation Australia
Ethics approval reference
HREC/15/CRGH/225,Sydney Local Health District Concord Repatriation General Hospital HREC
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