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

Abstract

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..