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Review
Improving knowledge of rare disorders since 1993: the Australian Paediatric Surveillance Unit
  1. Elizabeth J Elliott1,2,3,
  2. Suzy Teutsch1,2,3,
  3. Carlos Nunez1,2,3,
  4. Anne Morris1,2,3,
  5. Guy D Eslick1,2,3
  6. for the APSU Investigators and Contributors
  1. 1 The Australian Paediatric Surveillance Unit, Sydney, New South Wales, Australia
  2. 2 The University of Sydney, Faculty of Medicine and Health, Specialty of Child and Adolescent Health, Sydney, New South Wales, Australia
  3. 3 Kids Research, Sydney Children’s Hospitals Network, Westmead, New South Wales, Australia
  1. Correspondence to Professor Elizabeth J Elliott; elizabeth.elliott{at}health.nsw.gov.au

Abstract

The Australian Paediatric Surveillance Unit (APSU), established in 1993 to address the paucity of national data on rare childhood disorders, has become an invaluable research resource. It facilitates prospective, active surveillance for a variety of rare disorders, with monthly reporting by ~1500 paediatricians, who are invited to notify incident cases and provide demographic and clinical data. APSU is highly collaborative (used by >400 individuals/organisations), patient-informed and productive (>300 publications). In 30 years, 72 studies have been initiated on rare infections, and genetic, psychological and neurological disorders, and injuries. Return rates of monthly report cards were >90% for 30 years and paediatricians have provided data for >90% of notified cases. Although there are limitations, including case underascertainment in remote regions, APSU often provides the only available national data. APSU has assisted the government in reporting to the WHO, developing national strategies, informing inquiries and investigating disease outbreaks. APSU data have informed paediatrician education, practice, policy, and service development and delivery. APSU was integral in establishing the International Network of Paediatric Surveillance Units (INoPSU) and supporting development of other units. APSU’s expanded remit includes one-off surveys, hospital audits, systematic reviews, studies on the impacts of rare disorders on families, surveillance evaluations, and joint studies with INoPSU members. Paediatricians value the APSU, reporting that APSU data inform their practice. They must be congratulated for an outstanding collective commitment to the APSU, in providing unique data that contribute to our understanding of rare disorders and support optimal, evidence-based care and improved child health outcomes.

  • epidemiology
  • communicable diseases
  • paediatrics

https://doi.org/10.1136/archdischild-2023-326116

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    Footnotes

    • X @ProfEElliott

    • Contributors Study concept and design: EJE, GDE. Drafting of the manuscript: EJE, SMT, CN, AM, GDE. Critical revision of the manuscript for important intellectual content: EJE, SMT, CN, AM, GDE.

    • Funding Funding for communicable disease surveillance is provided by the Australian Government Department of Health and Aged Care, Communicable Disease Epidemiology and Surveillance Section (Health/21-22/D21-5425703). The FASD Study is supported by the Australian Government Drug and Alcohol Branch (GO2535). The study on severe injury due to disc batteries is supported by the Queensland Department of Health, and the septo-optic dysplasia study by the Australia and New Zealand Society for Paediatric Endocrinology and Diabetes. EJE is currently supported by an NHMRC Leadership Fellowship (#2026176). The Clive and Vera Ramaciotti Foundation (Perpetual Trustees) provided initial grant funding to establish the APSU. Major support was provided by the Financial Markets Foundation for Children, National Health and Medical Research Council (NHMRC) Enabling Grant (#402784, 2006-2010) and Australian Research Council (Linkage Grant #110200277, 2011-2015). Ongoing support has been received from the Australian Government Department of Health and Aged Care since 2007. APSU is grateful for past support from CSL Pharmaceuticals, Hanburys, AMP Limited, ANZ Bank, Australian CHARGE Association, Davies Collison Cave Attorneys, Glaxo Smith Kline, Healthway WA, Kids Research NSW, the Kirby Institute (previously National Centre in HIV Epidemiology and Clinical Research), NSW Department of Health, Nutricia Australasia, Paediatric Research Society of Australia and New Zealand, Rett Syndrome Association of Australia, Roche Products Pty Ltd, Telethon Institute for Child Health Research, Therapeutic Goods Administration, and the Neurofibromatosis Foundation. Professor Yvonne Zurynski was supported by a Creswick Foundation Fellowship. EJE has been supported by NHMRC Practitioner Fellowships (#457084, #1021480) a Medical Research Futures Fund Next Generation Fellowship (#1135959).

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    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

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