About our Organisation

The Network in Numbers

August 1998

Year formed

June 2000

First conference




studies conducted

50 mio.

children under active surveillance


The network was formed in August 1998 at a meeting of the 10 units expressing a desire to link with each other. This took place at the 22nd International Congress of Paediatrics in Amsterdam, The Netherlands. The first INoPSU conference was held in June 2000 in Canada and was attended by representatives of the existing units.

A document known as the Amsterdam-Ottawa Note detailing the functions and structure of the network was agreed. 

Our mission and vision

The mission of INoPSU is the advancement of knowledge of uncommon childhood infections and disorders and the participation of paediatricians in surveillance on a national and international basis so as to achieve a series of benefits.

The mission of this website is to collect information about the advancement of knowledge of uncommon childhood infections and disorders, aiming to facilitate sharing information and collaboration between researchers from different nations and scientific disciplines.

Our Administration

Our aims and objectives

  • facilitating communication and cooperation between existing national paediatric surveillance units;
  • to assist in the development of new units;
  • to facilitate sharing information and collaboration between researchers from different nations and scientific disciplines;
  • to share information on current, past and anticipated studies and their protocols, and on conditions that have been nominated for surveillance but are not selected;
  • to encourage the use of identical protocols to potentially enable simultaneous or sequential collection of data on rare paediatric disorders in two or more countries;
  • to share and distribute information of educational benefit to constituent units, notably on study and surveillance methodologies;
  • to share school techniques and models of evaluation for units;
  • to peer review and evaluate existing and proposed units;
  • to identify rare disorders of mutual interest and public health importance for cooperative surveys through each national unit;
  • to collaborate with and provide information to other groups interested in rare childhood diseases such as parent support groups;
  • to respond promptly to international emergencies relating to rare childhood conditions where national and international studies can make a contribution to science or public health.

Terms of Reference

The terms of reference of the organisation were revised following the 9th INoPSU business meeting in Vancouver. 


Currently INoPSU does not receive any funding. Each individual national unit has their own source of funding. A small amount of which is put aside to help develop INoPSU activities.

Methodology of Surveillance

The principle of 'active' surveillance is that initiation for notification comes from the unit rather than the clinician. Active surveillance results in considerably higher case ascertainment than passive surveillance and minimises recall bias. The methodology varies slightly between units to suit local conditions. 

In principle, the surveillance unit sends a monthly report card to the 'mailing list' of paediatricians and asks them simply to indicate whether they have 'nothing to report' or to mark the number of new cases of each condition listed that they have seen in the previous month.

Cards are returned to the unit. The individual or organisation responsible for a study (the 'investigator') is notified of positive case reports and given contact details of the reporting clinician. The investigator is then responsible for obtaining clinical and epidemiological data from reporting doctors by postal questionnaire and is for collation, analysis, presentation and publication of data and feedback to the unit's secretariat. Alternative data sources may be used to validate ascertainment. In most countries data collection is anonymous, investigators using a patient code and having no direct access to information that would allow them to identify or contact patients or their families.

Some units use a reply-paid report card and in Australia e-mail reporting was introduced in 1997. Telephone and facsimile reporting is requested for some studies where a timely report is required e.g. to facilitate obtaining biological specimens. On receipt of a case notification one unit (NZPSU) sends study questionnaires directly to the notifying clinician, rather than sending the notifying doctor's details to the investigator, in an attempt to make receipt of questionnaires more timely. In 2003, the return rate of the the monthly cards to units ranged from 73 - 98% and of questionnaires from 47 - 100%. 

Workload for the majority of clinicians participating in national surveillance of rare diseases is low. In any single year a large proportion of the mailing list do not report a single case and therefore are not required to complete a questionnaire requesting further details.

Amsterdam-Ottawa Note

detailing the functions and structure of the network