Journal article

Rare disease: a national survey of paediatricians' experiences and needs.

Yvonne Zurynski, Aranzazu Gonzalez, Marie Deverell, Amy Phu, Helen Leonard, John Christodoulou, Elizabeth Elliott

BMJ Paediatrics Open | BMJ Publishing Group | Published : 2017


Objective: To describe the experiences of Australian paediatricians while caring for children with rare diseases, and their educational and resource needs. Design: A brief online survey was developed and deployed to a representative sample of 679 paediatricians from the Australian Paediatric Surveillance Unit database. Results: Of the 679 paediatricians, 242 (36%) completed the survey. The respondents were representative of all states and territories of Australia, urban and rural regions, and hospital and private practice. Almost all respondents (93%) had seen children with one or more of >350 different rare diseases during their career; 74% had seen a new patient with rare disease in the la..

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Awarded by Australian Research Council

Awarded by NHMRC

Funding Acknowledgements

This research was supported by an Australian Research Council Linkage Project grant scheme (project no. LP110200277). HL is supported by an NHMRC Senior Research Fellowship (no. 1117105) and EE is supported by an NHMRC Practitioner Fellowship (no. 1021480).