Australian Respiratory Early Surveillance Team for Cystic Fibrosis: Detection of early lung disease in Cystic Fibrosis (AREST CF)
The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) is a multicentre collaborative research study. Beginning in 2006, it initially focussed on the assessment, treatment and prevention of CF lung disease between 0-6 years of age which aimed to identify key drivers of lung disease, targeting for intervention and prevention of lung damage early on. Whilst continuing to do this, AREST CF has also begun to explore interactions between CF lung health and puberty, mental health, family dynamics, pain, sleep and quality of life in our AREST CF adolescents, now aged 10-18 years. This sub-arm is called, The Next Generation Impact of Cystic Fibrosis.
| Study Summary | |
|---|---|
| Study name | Australian Respiratory Early Surveillance Team for Cystic Fibrosis: Detection of early lung disease in Cystic Fibrosis |
| Study abbreviation | AREST CF |
| Current principal investigator/s |
Sarath Ranganathan Stephen Stick |
| Primary Institution/s |
Murdoch Children’s Research Institute - MCRI
|
| Collaborating Institution/s |
Telethon Kids Institute - TKI |
| Major funding source/s |
National Health and Medical Research Council - NHMRC
Murdoch Children’s Research Institute - MCRI The Royal Children’s Hospital Foundation - RCHF |
| Study website | https://arestcf.telethonkids.org.au/ |
| Study focus |
AREST CF seeks to improve the detection, prevention and treatment of early respiratory disease in young children with cystic fibrosis in order to improve clinical outcomes and quality of life for patients and their families.
|
| Sampling frame |
Participants were recruited from the Royal Children’s Hospital (Melbourne) or Perth Children's Hospital (Perth) (cases and bronchoscopy/BAL controls); from hospital outpatient and inpatient appointments
|
| Primary study type | Case-control |
| Year commenced |
2004
|
| Is this study ongoing? | Yes - the study is ongoing |
| Ongoing recruitment? | Yes |
| Sample size (N) |
Detection of Early Lung Disease in Cystic Fibrosis (0-6 years) 207 CF Cases, 92 Controls as of October 2022 (Melbourne) Perth study closed at this stage, data and samples not available The Next Generation Impact of cystic fibrosis (10-18 years) Prequel study 32 adolescent and parent pairs enrolled (Melbourne), main study 38 enrolled (Perth) as of October 2022
|
| Survey data available? | Yes |
| Imaging data available? | Yes |
| Linkage to administrative dataset/s? | No, no consent to link to administrative dataset(s) obtained |
| Biosamples available? | Yes |
| Are data available to others outside study team, with appropriate safeguards and structures in line with the cohort’s ethics and governance processes? | Yes |
| Are there any costs associated with data/sample access for approved requests? | There are usually no costs associated with access |
| Broadest type of participant consent available |
Unspecified consent (can be used for any future ethically approved research) |
| Study Contacts | |
|---|---|
| Principal investigator/s |
Sarath Ranganathan Stephen Stick |
| Study Contact |
Email: arestCF@telethonkids.org.au
|