The Australian Paediatric Surveillance Unit (APSU), established in 1993, is a unique resource which has provided vital national data on 53 rare childhood diseases – an important but often neglected area of research.
The APSU fosters collaboration by supporting the establishment of national research teams for each rare condition studied. Up to 16 different rare conditions can be studied simultaneously and data on demographics, diagnosis, clinical management and outcomes are collected.
The APSU provides national coverage by involving an estimated 90% of all paediatricians around Australia who each receive an APSU report card every month. The success of the system is a credit to Australian paediatricians, some of whom have been reporting to the APSU every month for 20 years.
APSU is a member of the International Network of Paediatric Surveillance Units (INOPSU).
Our research supports the following outcomes:
- Understanding the impacts of rare diseases on families, clinicians and health services, including health costs
- Producing unique data through national surveillance into rare, chronic and complex childhood conditions
- International collaboration through the International Network of Paediatric Surveillance Units (INoPSU)
- Translation of research evidence into public health policy, clinical policy and advocacy
- Providing new information to support future research studies
- Education for clinicians, families and students
For a list of our current projects and active surveillance studies, please visit our website.
The research team
> Professor Elizabeth Elliott, APSU Director
Elizabeth is a respected paediatrician recognised for her invaluable work in rare diseases and indigenous health. She has a particular interest is fetal alcohol syndrome (FASD). She runs a FASD service at Westmead and is the senior paediatrician on the Lililwan Project, a community-led strategy addressing FASD in WA's Fitzroy Valley. Please visit Elizabeth's University of Sydney profile page for more information.
> Associate Professor Yvonne Zurynski, APSU Deputy Director
Yvonne has over 15 years’ experience in the medical research, with interests in different fields of research ranging from trauma and neurology to primary health and public health research. Her particular focus is on the complex, chorionic and specialised needs of children with rare diseases. More information can be found on Yvonne's University of Sydney profile page
> Other Research Team Members
- Dr Marie Deverell, Senior Research Fellow, email: firstname.lastname@example.org
- Dr Tracey Tsang, Senior Research Fellow (FASD), email: email@example.com
- Mrs Jocelynne McRae, PAEDS Manager, email: firstname.lastname@example.org
- Ms Dannielle Handel, Administrative officer, email: email@example.com
Noonan S, Zurynski Y, Currie B, McDonald M, Wheaton G, Nissen M, Curtis N, Isaacs D, Richmond P, Ramsay J, Elliott E, Carapetis J (2013) A National Prospective Surveillance Study of Acute Rheumatic Fever in Australian Children. Pediatric Infectious Disease Journal 32(1): e26-e32
Zurynski Y, McIntyre P, Booy R, Elliott E (2013), Paediatric Active Enhanced Disease Surveillance: A new surveillance system for Australia. Journal of Paediatrics and Child Health 49(7), 588-594
Anderson M, Elliott E, Zurynski Y (2013), Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support.Orphanet Journal of Rare Diseases 8(1): 22
Burns L, Breen C, Bower C, O' Leary C, Elliott EJ (2013) Counting Fetal Alcohol Spectrum Disorder in Australia: The evidence and the challenges. Drug Alcohol Rev 32(5):461-7
Esterman E, Lahra M, Zurynski Y, Booy R, Elliott E (2013) Influenza infection in infants aged <6 months during the H1N1-09 pandemic: A hospital-based case series. Journal of Paediatrics and Child Healt. 49: 635-640
Zurynski Y, Elliott E (2013) Challenges of transition to adult health services for patients with rare diseases The Medical Journal of Australia 198: 575-576
Watkins RE, Elliott EJ, Mutch RC, et al (2012) Consensus diagnostic criteria for fetal alcohol spectrum disorders in Australia: a modified Delphi study. BMJ Open 2(5)