How does the APSU work?

operation of the APSU

Each month ~ 1250 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), and report study findings annually through the APSU.

selection of conditions for study

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.

To satisfy the criteria for study a condition must:

• be sufficiently uncommon so that the system is not over-burdened;
• usually result in referral to a paediatrician or related specialist;
• 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.

organisation

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.

conditions studied

Between 1993 and 2007, the APSU monitored 42 uncommon childhood conditions. Information on all studies conducted through the  APSU since inception can be found under Studies.

case classification

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.  Accurate classification of reported cases is facilitated by use of a unique identification code that is provided by clinicians on the study questionnaires.  This enables Investigators to identify duplicate reports. To confirm  a case, the clinical information reported in the questionnaire is used.  The method of classifying cases is shown in Figure 2. 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.