The aims of INoPSU
| Primary aim: |
| • To enhance communication and collaboration between national |
| Paediatric Surveillance Units and child health researchers worldwide |
| Secondary aims include: |
| • Collecting simultaneous or sequential, standardised data from two or more countries to: |
| – document and compare epidemiology on rare and/or |
| emerging disorders; |
| – provide educational information to paediatricians to facilitate early |
| diagnosis and appropriate management of rare conditions; |
| – develop uniform diagnostic criteria; |
| – establish international cohorts for future research, including |
| molecular epidemiological studies; and |
| – mount a response to epidemiological emergencies. |
| • Disseminating information on rare diseases to INoPSU members, |
| community and parent-support groups, and relevant authorities to |
| inform clinical practice, policy development, and educational |
| and public health initiatives |
| • Sharing information about the surveillance process and facilitating |
| evaluation of units and development of new units |