About the APSU

The APSU was established in 1993 by Director, Professor Elizabeth Elliott. The APSU facilitates active surveillance of uncommon childhood diseases, complications of common diseases or adverse effects of treatment. Disease are chosen for their public heath significant and impact on health resources. To date the APSU has studied a range of infectious, vaccine prevenatable, mental health, congenital and genetic conditions as well as injuries in childhood. For many of these childhood conditions, the APSU is the only national mechanism for data collection.

The APSU has been used by over 220 individual researchers, to run 52 surveillance studies. To see a list of current studies visit our current studies page. Currently there are 15 surveillance units worldwide (Click here to visit the INOPSU website for links to other surveillance units).

The APSU has made a significant contribution to the health and welfare of Australian children through the collection of epidemiological and clinical data, which has had direct relevance to clinical and public health policy and resource allocation.

Aims of the APSU

To provide a national active surveillance mechanism that can be used to:

  • Study the epidemiology, clinical features, current management and short term outcomes or rare childhood conditions in Australia;
  • Respond to epidemiological emergencies such as outbreaks and emerging disease conditions; and
  • Initiate and facilitate national collaborative research consistent with national child health priorities, including “a health start to life” and to fill knowledge gaps.

To produce and disseminate evidence that will support:

  • the development of effective educational strategies and clinical guidelines for clinicians;
  • the development of appropriate prevention strategies and community awareness campaigns and research in child health; and
  • the development of evidence based policy.

How does the APSU work?


Each month ~ 1350 clinicians on the APSU contact database are sent either a reply-paid report card or an e-mail ‘card' listing conditions currently being studied through the APSU. Clinicians are asked to report children newly diagnosed with any of the conditions listed. Investigators conducting a study are informed weekly of new cases reported by APSU contributors. The Investigator then sends a brief questionnaire to the clinician requesting further de-identified information. Investigators are responsible for collation, analysis and publication of this data (Figure 1, below), and report study findings annually through the APSU.

APSU operations3

Figure 1: APSU Operations



Individuals or organisations may apply to study a condition through the APSU and applications undergo a process of peer review and revision before being listed on the monthly report card.

The criteria for inclusion of a condition on the monthly report card are:

  • the condition is sufficiently uncommon so that the system is not over-burdened;
  • children with the condition are usually referred to a paediatrician or another paediatric specialist;
  • the data collected will provide information that satisfies the study aims and is not available from other sources.

Conditions are usually studied for one to three years, although provision for on-going study may be granted for diseases of public health significance or with very low incidence.


The APSU is comprised of:

  • Patron
  • APSU Executive
  • Advisory Council
  • Scientific Review Panel (SRP).


Figure 2: APSU Structure (image to come)


The APSU Board comprises prominent paediatricians, epidemiologists and public health personnel who meet annually and oversee the management of the unit and set strategic directions.

The Scientific Review Panel meets regularly to evaluate applications to conduct a study through the unit, ensuring that the proposed study meets with the general aims of the APSU and that high scientific standards are maintained.


Between 1993 and 2011, the APSU monitored 48 uncommon childhood conditions. Information on all studies conducted through the APSU since its inception can be found under the Studies section.


The APSU aims to estimate the frequency of uncommon conditions seen by child health specialists and to provide information which is representative of the Australian population.  Maximal and unbiased case ascertainment is a high priority. Over-reporting rather than under-reporting of cases will help achieve this and duplicate reports are encouraged.  Duplicate reports are identified according to unique identifiers provided by clinicians on the study questionnaires and duplicate reports are excluded from final counts. To confirm a case, the clinical information reported in the questionnaire is used. The APSU encourages Investigators to use multiple sources of case ascertainment where possible.  This is particularly important in remote areas, where children have limited access to paediatricians and are often seen by general clinicians. Reported rates for conditions ascertained through the APSU therefore represent a minimum estimate of these conditions in the relevant Australian populations.