Australian Paediatric Surveillance Unit (APSU)

The Australian Paediatric Surveillance Unit (APSU) was founded in 1993 in recognition of the gap in knowledge about the epidemiology of rare childhood disorders in Australia.  It is a unique resource which has provided vital national data on 69 rare disorders including infections, genetic diseases and injuries.

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 25 years.

APSU is a member of the International Network of Paediatric Surveillance Units (INoPSU).

More information can be found on the APSU website or by contacting us at SCHN-APSU@health.nsw.gov.au

Research interests

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.

> Other Research Team Members

• Dr Tracey Tsang, Senior Research Fellow (FASD), email: tracey.tsang@health.nsw.gov.au
• Dr Suzy Teutsch, Research Fellow, email: suzy.teutsch@health.nsw.gov.au
• Mr Carlos Nunez Miranda, Research Associate, email:  carlos.nunezmiranda@health.nsw.gov.au
• Mrs Dannielle Handel, Office Manager, email: dannielle.handel@health.nsw.gov.au

Key publications

2018

• Bartlett AW, Hall BM, Palasanthiran P, McMullan B, Shand AW, Rawlinson WD. Recognition, treatment, and sequelae of congenital cytomegalovirus in Australia: An observational study. Journal of Clinical Virology. 2018 Sep 27.
• Zurynski YA, Deverell M, Phu A, Booy R, Elliott EJ. Do children really die from ‘flu? National surveillance for influenza related severe complications in Australian children. Archives of Disease in Childhood Mar 2018, 103 (Suppl 1) A2. 10.1136/archdischild-2018-rcpch.6
• Zurynski YA, Ridley G, Jalaludin B, Elliott EJ, on behalf of the APSU VKDB Study Group   21 years of surveillance for vitamin k deficiency bleeding in infants: policy changes in Australia and International comparisons. Archives of Disease in Childhood Mar 2018, 103 (Suppl 1) A200-A202; DOI: 10.1136/archdischild-2018-rcpch.479
• Zurynski YA, Brotherton JML, Novakovic D, Cheng ATL, Booy R, Berkowitz R, Garland SM, Elliott EJ, Black R.  Reduced rates of juvenile onset recurrent respiratory papillomatosis in Australia after implementation of a national HPV vaccination program. Archives of Disease in Childhood Mar 2018, 103 (Suppl 1) A203; DOI: 10.1136/archdischild-2018-rcpch.485
• Novakovic D, Cheng ATL, Zurynski Y, Booy R, Walker PJ, Berkowitz R, Harrison H, Black R, Perry C, Vijayasekaran S, Wabnitz D, Burns H, Tabrizi SN, Garland SM, Elliott E, Brotherton JML. A prospective study of the incidence of juvenile-onset recurrent respiratory papillomatosis after implementation of a national HPV vaccination program. J Infect Dis 2018; 217: 208-212. doi: 10.1093/infdis/jix498.

2017

• Zurynski Y, Gonzales A, Deverell M, Phu A, Leonard H, Christodoulou, Elliott E. Rare disease: A national survey of paediatrician’s experiences and needs. BMJ Paediatrics Open 2017; 1:e000172. doi:10.1136/bmjpo-2017-000172.
• Zurynski, Y., Phu, A., Sureshkumar, P., Cherian, S., Deverell, M., Elliott, E. (2017). Female genital mutilation in children presenting to Australian paediatricians. Archives of Disease in Childhood, 2017;102(6), 509-515.
• Zurynski, Y., Elliott, E. (2017). No compromise on female genital mutilation. Journal of Paediatrics and Child Health, 53(6), 612-613.
• Zurynski Y, Deverell M, Dalkeith T, Johnson S, Christodoulou J, Leonard H, Elliott EJ; APSU Rare Diseases Impacts on Families Study group.  Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays.  Orphanet J Rare Dis. 2017 Apr 11;12(1):68
• Saddi, V., Beggs, S., Bennetts, B., Harrison, J., Hime, N., Kapur, N., Lipsett, J., Nogee, L., Phu, A., Suresh, S., Selvadurai, H., Zurynski, Y., et al (2017). Childhood interstitial lung diseases in immunocompetent children in Australia and New Zealand: A decade's experience. Orphanet Journal of Rare Diseases, 12(1), 1-9.
• Lacaze P, Millis N, Fookes M, Zurynski Y, Jaffe A, Bellgard M, Winship I, McNeil J, Bittles A. (2017). Rare disease registries: a call to action. Internal Medicine Journal, 47(9), 1075-1079

2016

• Durkan AM, Kim S, Craig J, & Elliott E. The long-term outcomes of atypical haemolytic uraemic syndrome: a national surveillance study. Arch Dis Child. 2016; 101(4):387-391
• Li-Kim-Moy J, Dastouri F, Rashid H, Khandaker G, Kesson A, McCaskill, M, et al. Utility of early influenza diagnosis through point-of-care testing in children presenting to an emergency department. J Paediatr Child Health. 2016; 52(4):422-429
• Lutz TL, Elliott EJ, Jeffery HE. Sudden unexplained early neonatal death or collapse: a national surveillance study. Pediatr Res. 2016; 80(4):493-498
• McGillivray A, Polverino J, Badawi N, Evans N. Prospective Surveillance of Extreme Neonatal Hyperbilirubinemia in Australia. J Pediatr. 2016 Jan;168:82-7
• Mehr S, Allen R, Boros C, Adib N, Kakakios A, Turner PJ, Rogers M, Zurynski Y, Singh-Grewal D. Cryopyrin-associated periodic syndrome in Australian children and adults: Epidemiological, clinical and treatment characteristics. J Paediatr Child Health. 2016;52(9):889-95.
• Sureshkumar P, Zurynski Y, Moloney S, Raman S, Varol N, Elliott EJ. Female genital mutilation: Survey of paediatricians' knowledge, attitudes and practice. Child Abuse Negl. 2016; 55:1-9

2015

• Desai S, Smith T, Thorley BR, Grenier D, Dickson N, Altpeter E, et al. Performance of acute flaccid paralysis surveillance compared with World Health Organization standards. J Paediatr Child Health. 2015; 51 (2):209-214
• Elliott E, Zurynski Y. Rare diseases are a 'common' problem for clinicians. Aust Fam Physician. 2015; 44(9):630-633
• Hime NJ, Zurynski Y, Fitzgerald D, Selvadurai H, Phu A, Deverell M, et al. Childhood interstitial lung disease: A systematic review. Pediatric Pulmonology. 2015; 50 (12):1383-1392
• Ko DW, Zurynski Y, Gilbert GL, and the GBS Study Group. Group B streptococcal disease and genotypes in Australian infants. J Paediatr Child Health. 2015; 51(8):808-14
• Mackie FE, Kainer G, Adib N, Boros C, Elliott EJ, Fahy R, et al. The national incidence and clinical picture of SLE in children in Australia - a report from the Australian Paediatric Surveillance Unit. Lupus 2015 ;24(1):66-73
• Raynes-Greenow, C, Polis S, Elliott E, Hardikar W, Kesson A, Kaldor J, et al. Childhood hepatitis C virus infection: An Australian national surveillance study of incident cases over five years. J Paediatr Child Health. 2015; 51(11):1115-1120
• Zurynski Y, Sureshkumar P, Phu A, Elliott E. Female genital mutilation and cutting: a systematic literature review of health professionals' knowledge, attitudes and clinical practice. BMC Int Health Hum Rights. 2015; 15(1): 32

2014

• Hime NJ, Fitzgerald D, Robinson P, Selvadurai H, Van Asperen P, Jaffe A, et al. Childhood interstitial lung disease due to surfactant protein C deficiency: frequent use and costs of hospital services for a single case in Australia. Orphanet J Rare Dis. 2014; 9:36
• Khandaker G, Zurynski Y, Ridley G, Buttery J, Marshall H, Richmond PC, et al. Clinical epidemiology and predictors of outcome in children hospitalised with influenza A (H1N1) pdm09 in 2009: a prospective national study. Influenza Other Respir Viruses. 2014; 8(6):636-45
• Khandaker G, Zurynski Y, Jones C. Surveillance for congenital rubella in Australia since 1993: cases reported between 2004 and 2013. Vaccine. 2014; 32(50):6746-6751

2013

• Anderson M, Elliott EJ, Zurynski Y.  Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8:22
• Esterman EE, Lahra MM, Zurynski YA, Booy R, Elliott EJ. (2013). Influenza infection in infants aged <6 months during the H1N1-09 pandemic: A hospital-based case series. J Paediatr Child Health. 49(8):635-40
• Khandaker G, Heron L, Rashid H, Li-Kim-Moy J, Lester-Smith D, Kesson A, McCaskill M, Jones C, Zurynski Y, Elliott EJ, Dwyer DE, Booy R. (2013). Comparing the use of, and considering the need for, lumbar puncture in children with influenza or other respiratory virus infections.  Influenza & Other Respiratory Viruses, 7(6):932-7.
• Marshall HS, McIntyre P, Richmond P, Buttery JP, Royle JA, Gold MS, Booy R. (2013). Changes in patterns of hospitalized children with varicella and of associated varicella genotypes following introduction of varicella vaccine in Australia. Pediatric Infectious Disease Journal, 32(5): 530-537.
• Noonan S, Zurynski YA, Currie BJ, McDonald M, Wheaton G, Nissen M, Carapetis JR. (2013). A national prospective surveillance study of acute rheumatic fever in Australian children. Pediatric Infectious Disease Journal, 32(1): e26-32.
• Zurynski Y, McIntyre P, Booy R, Elliott E J, on behalf of PAEDS group. (2013). Paediatric active enhanced disease surveillance: a new surveillance system for Australia. J Paediatr Child Health, 49(7): 588-594.
• Zurynski, Y., Srikanthan, S., & Elliott, E. J. (2013). Australian Paediatric Surveillance Unit: 20 Years of research into rare diseases. Sydney, NSW: Australian Paediatric Surveillance Unit (APSU).
• Zurynski, Y. A., & Elliott, E. J. (2013). Challenges of transition to adult health services for patients with rare diseases. [APSU]. Medical Journal of Australia, 198(11), 575-576.