About INoPSU

Establishment of INoPSU

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. Click here for the Amsterdam-Ottawa Note (PDF file 155KB).

Mission

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.

Aims

• 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 re-written following the 7th INOPSU business meeting and can be found HERE

Funding

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.

We comply with the HONcode standard for trustworthy health information: verify here.