None listed
Conditions
Brief summary
Bronchiectasis is a chronic respiratory condition associated with recurrent respiratory tract infections and reduced quality of life that can affect both adults and children. It is only recently that increasing amounts of research is being undertaken to gain a better understanding of the condition, and ultimately contribute to the development of future treatments for bronchiectasis The overarching aim of the NZ Bronchiectasis Registry is to contribute to the improvement of quality of life in patients of all ages with bronchiectasis. The main objectives of the study will be achieved by: a) developing a multicentre bronchiectasis registry incorporating baseline data collection with annual follow-up data b) providing a comprehensive description of characteristics of patients with bronchiectasis and the associated burden of the disease throughout New Zealand c) offering a collaborative approach with "EMBARC" (the European equivalent of the NZBR) and the Australian Bronchiectasis Registry, possibly as an Australasian Bronchiectasis Registry in future
Interventions
- This is an observational study concerning patients of all ages (no lower or upper age limit) with non-cystic fibrosis bronchiectasis, modelled on the Europe-wide EMBARC registry and affiliated with the Australian Bronchiectasis Registry. Ethics and localities approval has already been obtained.
- Data will be collected in two distinct fields
a) Baseline study entry:as a basic dataset
b) Annual review: follow-up data completed for each year of the study,
indicating yearly exacerbation freque
- This is an observational study concerning patients of all ages (no lower or upper age limit) with non-cystic fibrosis bronchiectasis, modelled on the Europe-wide EMBARC registry and affiliated with the Australian Bronchiectasis Registry. Ethics and localities approval has already been obtained. - Data will be collected in two distinct fields a) Baseline study entry:as a basic dataset b) Annual review: follow-up data completed for each year of the study, indicating yearly exacerbation frequency, hospitalisations and survival status - Patients will need to provide written consent to be included (or have parental consent if too young to do so) - Participation will involve face-to-face visits, either as part of routine clinical care or through additional visits to clinic. Contact may also be made via telephone. - Additional observations will include investigations performed in determining aetiology of patients' bronchiectasis, spirometry/lung function, history of exacerbations, sputum microbiology and quality of life assessments (NOTE - all of these observations are performed as part of routine clinical care; no additional investigations are proposed purely for research purposes) - This is planned to be an ongoing registry with no definite end-point
Sponsors
Counties Manukau Health
Eligibility
Sex/Gender
All
Healthy volunteers
No
Inclusion criteria
Patient of any age with clinical history consistent with bronchiectasis Has a CT chest scan consistent with bronchiectasis Does not have known cystic fibrosis Has not had a previous lung or heart transplant Has provided signed written consent to inclusion in the study, or written consent provided by parent or legal representative if aged <16
Exclusion criteria
No diagnosis of bronchiectasis (or no CT confirming this diagnosis) Is known to have cystic fibrosis Has had a previous lung or heart transplant Is unable to consent to inclusion in the study
Outcome results
None listed