Projects per year
Abstract
Addressing the recognized challenges and inequalities in providing high quality healthcare for rare diseases such as children's interstitial lung disease (chILD) requires collaboration across institutional, geographical, discipline, and system boundaries. The Children's Interstitial Lung Disease Respiratory Network of Australia and New Zealand (chILDRANZ) is an example of a clinical network that brings together multidisciplinary health professionals for collaboration, peer learning, and advocacy with the goal of improving the diagnosis and management of this group of rare and ultra-rare conditions. This narrative review explores the multifaceted benefits arising from social learning spaces within rare disease clinical networks by applying the value creation framework. The operation of the chILDRANZ network is used as an example across the framework to highlight how value is generated, realized, and transferred within such collaborative clinical and research networks. The community of practice formed in the chILDRANZ multidisciplinary meetings provides a strong example of social learning that engages with the uncertainty inherent in rare disease diagnosis and management and pays attention to generate new knowledge and best practice to make a difference for children and families living with chILD. This review underscores international calls for further investment in, and support of, collaborative clinical networks and virtual centers of excellence for rare disease.
Original language | English |
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Pages (from-to) | 2257-2266 |
Number of pages | 10 |
Journal | Pediatric Pulmonology |
Volume | 59 |
Issue number | 9 |
Early online date | 10 Mar 2023 |
DOIs | |
Publication status | Published - Sept 2024 |
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- 2 Finished
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Australian Genomics 2.0
Laing, N. (Investigator 01), Davis, M. (Investigator 02) & Nowak, K. (Investigator 03)
NHMRC National Health and Medical Research Council
1/01/21 → 31/03/24
Project: Research
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Preparing Australia for Genomic Medicine - A proposal by the Australian Genomics Health Alliance
Laing, N. (Investigator 01)
Medical Research Future Fund MRFF
1/10/18 → 31/12/22
Project: Research