Rare disease surveillance: An international perspective

Area of Science:

• Paediatric epidemiology
• Public health surveillance
• International health networks

Background:

• The International Network of Paediatric Surveillance Units (INoPSU) was established in 1998.
• INoPSU held its first formal meeting in Ottawa, Ontario in June 2000.

Purpose of the Study:

• Document the methodology and activities of national paediatric surveillance units.
• Describe the formation and scope of INoPSU.
• Assess the impact of INoPSU studies on education, public health, and paediatric practice.

Main Methods:

• Information was gathered from directors of paediatric surveillance units across 10 countries.
• Data included unit affiliations, funding, staffing, case ascertainment methods, mailing lists, response rates, and diseases studied.
• A MEDLINE search identified relevant original articles, supplemented by annual reports.

Main Results:

• Ten established units (1986-1997) conduct active national surveillance.
• These units monitor over 8500 clinicians monthly, covering a pediatric population exceeding 47 million.
• By January 1999, 147 studies on 103 conditions were initiated, with 63 completed.

Conclusions:

• INoPSU fosters international collaboration among surveillance units from four continents.
• It offers unique opportunities for cross-sectional studies of rare diseases in diverse populations.
• The network facilitates idea exchange on methodology, ethics, evaluation, and application of surveillance data.