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Evaluation of a national resource to identify and study rare diseases: the Australian Paediatric Surveillance Unit

Suwen He1, Yvonne A Zurynski, Elizabeth J Elliott

  • 1Australian Paediatric Surveillance Unit, The Children's Hospital at Westmead, Westmead, NSW, Australia.

Journal of Paediatrics and Child Health
|August 26, 2009
PubMed

Insights

The Australian Paediatric Surveillance Unit (APSU) effectively collects data on rare childhood conditions, informing policy and practice. Continued funding is crucial for its stability and ongoing success in child health surveillance.

Area of Science:

  • Public Health Surveillance
  • Epidemiology of Rare Childhood Conditions
  • Child Health Policy and Practice

Background:

  • The Australian Paediatric Surveillance Unit (APSU) is a key system for monitoring rare childhood diseases.
  • Evaluating surveillance systems is essential for ensuring their effectiveness and impact on public health.
  • Understanding user feedback is vital for the continuous improvement of public health initiatives.

Purpose of the Study:

  • To conduct a comprehensive evaluation of the Australian Paediatric Surveillance Unit (APSU).
  • To assess the APSU's performance against established surveillance system criteria.
  • To gather feedback from key stakeholders, including clinicians, researchers, and public health professionals.

Main Methods:

  • Utilized Centres for Disease Control and Prevention (CDC) criteria for evaluating surveillance systems.
  • Reviewed APSU productivity, response rates, mailing list completeness, and study impacts.
  • Administered anonymous evaluation questionnaires to 1260 reporting clinicians, 42 researchers, and 86 public health professionals.

Main Results:

  • APSU data inform public health policy and clinical practice for rare childhood conditions.
  • High participation (92%) and return rates (96%) were observed among clinicians.
  • Users found APSU valuable for knowledge generation (81%), research priorities (78%), clinical practice (70%), and policy (70%).

Conclusions:

  • APSU meets CDC criteria for usefulness, simplicity, acceptability, representativeness, sensitivity, and timeliness.
  • The system is highly productive and valued by child health professionals and researchers.
  • Lack of continuing core funding poses a threat to the stability of the APSU.
Abstract

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