National surveillance of health conditions are potent instruments to obtain valuable information that contribute for the knowledge of epidemiology of the condition, its clinical presentation and evolution, rational organization of resources (health, education, social services) and advocacy from patient and family associations.
The case-study of the implementation of the Programa de Vigilância Nacional da Paralisia Cerebral aos 5 Anos in Portugal is used to discuss crucial issues as: justification for the surveillance and aims; stockholders, alliances and partnerships; definitions, classifications, tools for assessment, instruments and methods; coverage, reliability and validity; population denominators, indicators; sustainability; dissemination, usefulness of information.
In spite of the specificities of paediatric conditions, the requirements for a useful and successful national surveillance of health conditions are mostly common to other contexts.
Public health has among its aims to obtain, produce and disseminate better, accurate and up-to-date information on health conditions that have importance for the wellbeing of the population, the organization of health services and the monitor the health of the population. Producing meaningful, prospective health indicators is defiant and requires massive effort. Sharing experiences of success and failure and discussing how threats and hurdles have been faced is a useful way to promote public health practice and research.
Assistente Hospitalar Graduado de Pediatria, Neonatologista, na UCIN do Hospital Dona Estefânia (CHLC). Coordenador do Colégio de Neonatologia da Ordem dos Médicos. Mestre em Epidemiologia. Responsável pelo Gabinete de Análise Epidemiológica e Estatística do Centro de Investigação do CHLC. Responsável pelo Registo Nacional de Paralisia Cerebral. Vogal da Secção de Epidemiologia da European Society of Paediatric Research. Consultor da DGS.