Australian Bronchiectasis Registry: Registration gets under way in NSW
The Australian Non-Cystic Fibrosis Bronchiectasis Registry (ABR) has confirmed its first 60 patient registrations at Sydney’s Concord Repatriation General Hospital, the first of 11 centres participating in this national research project. Investigators now expect all the participating centres will receive their approvals in the coming months.
Patients, or parents of children with bronchiectasis, who choose to participate are agreeing to share their (or their child’s) health information and permitting it to be recorded in the registry. Apart from completing a short questionnaire once a year, there are no additional tests, or extra visits required. There is also an optional opportunity for patients to allow the registry access to Medicare and pharmaceutical benefits claims information. This is important because little is known about the burden of healthcare costs patients with this lung disease may have. Participation in the registry will also help us gain a better understanding of bronchiectasis, its impact on everyday life and the effectiveness of current treatments.
For further information and a list of the participating centres, please visit www.lungfoundation.com.au/bronchiectasis-registry/ or contact the ABR Project Manager at firstname.lastname@example.org or phone 0478 947 428.