November 28, 2016

New research and peer-support network for childhood interstitial and rare lung disease

Childhood Interstitial and Diffuse Lung Disease (chILD) is a group of rare diseases that can have profound impact on families and healthcare systems due to disease severity and chronicity. The healthcare burden of chILD is under-recognised, treatment can be highly challenging and there has historically been relatively little research to inform clinical practice.

Experts around Australia and New Zealand are combining their skills to improve healthcare delivery to affected children. The Childhood Interstitial and Rare Lung Disease Research and Peer Support Network of Australia and New Zealand (chILDRANZ) meet monthly via enhanced video-conferencing to discuss challenging cases and share resources. A licence for the web-based video-conferencing platform that can be used from most computers was kindly provided by Professor Hugh Dawkins from the Office of Population Health Genomics.

In addition to sharing expertise to improve medical management for patients, the meetings are also used to develop strategies to support children affected by rare paediatric lung disease and their families.  Meetings are attended by approximately 20 respiratory physicians, histopathologists and geneticists. Since November 2016 experts from the United States are also joining the meeting.

Feedback from participating members has been extremely positive, with reports of improvements in medical management of patients as a direct result of being presented at these meetings.

For more information please contact Lung Foundation Australia’s Program Manager – Rare Lung Disease Sonia Boyd at sonia@lungfoundation.com.au.