Child and Youth Cystic Fibrosis Clinical Network

The Cystic Fibrosis Clinical Network was developed in 2014 and transitioned to the Respiratory and Sleep Clinical Network in July 2023.

This Clinical Network (CN) has been supporting multidisciplinary teams working across primary, secondary and tertiary services, to deliver best practice care in the treatment of cystic fibrosis. The network worked closely with Cystic Fibrosis NZ.

A number of workstreams completed the following projects:

Cystic Fibrosis information for newly diagnosed infants

• A handout for families on how to give pancreatic enzymes can be viewed or dowloaded here

• A handout for families on how to give salt to their child can be viewed or downloaded here

Additional information about newly diagnosed Cystic Fibrosis can be found on the Cystic Fibrosis NZ website:

• https://www.cfnz.org.nz/get-support/resources/guides/

• https://www.cfnz.org.nz/life-with-cf/new-diagnosis/

Cystic Fibrosis Clinical Guidance

All guidelines on Cystic Fibrosis have been made available on the Starship Website. Please see https://starship-org.nz/health-professionals/ to search for the guidelines you want, which include:

• Annual review for children and young people with Cystic Fibrosis

• Antibiotic allergy in Cystic Fibrosis

• Antibiotic treatment for respiratory exacerbations in Cystic Fibrosis

• Aspergillus lung disease in Cystic Fibrosis

• Dermatological involvement with Cystic Fibrosis

• End of life care in Cystic Fibrosis

• Investigation of respiratory physiology in Cystic Fibrosis

• Lung Transplant Assessment for a child with Cystic Fibrosis

• Non infective respiratory complications in Cystic Fibrosis

• Nutrition care and management of Cystic Fibrosis

• Other complications of Cystic Fibrosis

• Psychological screening of young people with Cystic Fibrosis

• Regular three monthly clinic review for children and young people with Cystic Fibrosis

• Sleep and sleep disordered breathing in Cystic Fibrosis

Infection control practices for children and young people with Cystic Fibrosis.

The infection Control recommendations can be found on the Starship website.

The goal of these recommendations is to reduce the risk of transmission and acquisition of CF pathogens between individuals, while recognising that the risk is unlikely ever to be minimised to zero.

If you would like to contact us for further information, please email respiratory@paediatrics.org.nz