The Australian Paediatric Surveillance Unit: achievements in research, advocacy and care for children living with rare conditions for over 30 years

The Australian Paediatric Surveillance Unit was established in 1993 to facilitate the study of rare childhood diseases through active, prospective surveillance and to address knowledge gaps.

Each month, paediatricians nationwide are prompted to report cases of selected rare disorders and provide demographic and clinical details. Over the past 30 years, more than 75 studies have been completed on rare infections, medication complications, injuries, genetic disorders, and other conditions, involving over 400 clinician researchers.

APSU also conducts hospital audits, parent surveys, and systematic reviews on rare disorders and their impacts, and collaborates internationally via the International Network of Paediatric Surveillance Units. APSU works closely with consumer groups to advocate for families living with rare disorders.

Results from key studies will illustrate the impact of APSU research on clinical practice, policy, and clinician education, highlighting the important role of paediatricians in improving knowledge of rare disorders and health outcomes for affected children.

Elizabeth Elliott AM FAHMS FRSN is a Distinguished Professor in Paediatrics and Child Health at the University of Sydney, a Consultant Paediatrician and Head of the NSW Fetal Alcohol Spectrum Disorder (FASD) Assessment Service at the Children’s Hospital at Westmead, and an NHMRC Leadership Fellow. She founded the Australian Paediatric Surveillance Unit in 1993 and serves as its Director. Her research interests include FASD, cerebral palsy, and rare disorders. She leads research programs in remote Aboriginal communities and in Vietnam, is the senior spokesperson for child health for UNICEF Australia, and consults for the WHO and NIAAA.

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