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Rastreio neonatal da drepanocitose na Europa: observações e consensos de uma reunião pan-europeia
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Orientador(es)
Resumo(s)
O rastreio neonatal da drepanocitose permite a adoção precoce de medidas
de prevenção que contribuem para a diminuição da mortalidade
infantil associada a esta doença, que nos últimos anos se tem vindo a
transformar um problema global de saúde na Europa. Para tentar perceber
o que se passa a nível europeu, relativamente às políticas nacionais de
rastreio neonatal e à existência de registos nacionais de dados epidemiológicos
da drepanocitose, foi organizada uma conferência Pan-europeia
que decorreu em Berlim durante dois dias, em abril de 2017. Pretendia-se
ainda identificar as questões-chave, da perspetiva clínica e laboratorial,
relacionadas com a implementação e manutenção dos programas de rastreio
neonatal europeus e tentar definir consensos relativamente a estas
questões, que permitam a uniformização do rastreio neonatal desta doença
na Europa. Apesar de algumas tentativas anteriores para uniformizar os
cuidados de saúde a prestar a estes doentes na Europa, concluiu-se que
continuam a existir diferenças significativas entre os vários países, tendo
também sido identificada uma grande heterogeneidade em termos de políticas
e metodologias de rastreio neonatal. Participaram nesta conferência
mais de 50 profissionais com experiência na área do rastreio neonatal
e da drepanocitose, oriundos de 13 países, incluindo Portugal, permitindo
conhecer melhor a situação europeia atual relativamente à drepanocitose,
nomeadamente no que se refere ao rastreio neonatal, e que contribuíram
para a elaboração dos consensos publicados em 2018.
Neonatal screening for sickle-cell disease (SCD) allows for early imple - mentation of prevention measures leading to the decrease of infant mortality associated with this disease, which in recent years has become a global health problem in Europe. To understand the situation in Europe, regarding national politics and the existence of national registries for SCD, a Pan-European Conference was organized and was held in Berlin in April 2017. This meeting also intended to identif y the key issues, from the clinical and laborator y perspectives, related to the implementation and maintenance of neonatal screening programs in Europe, and to defi - ne consensuses for standardization of the neonatal screening of this disease in Europe. In spite of some previous initiatives for standardization of health care measures for these patients, a large heterogeneity was identified, which was also present for newborn screening policies and methodologies. More than 50 professionals with experience in the field of neonatal screening and sickle-cell disease, from 13 dif ferent countries, including Por tugal, were present in the conference, allowing a better knowledge on the European situation regarding SCD newborn screening, and contributed to the elaboration of the consensus published in 2018.
Neonatal screening for sickle-cell disease (SCD) allows for early imple - mentation of prevention measures leading to the decrease of infant mortality associated with this disease, which in recent years has become a global health problem in Europe. To understand the situation in Europe, regarding national politics and the existence of national registries for SCD, a Pan-European Conference was organized and was held in Berlin in April 2017. This meeting also intended to identif y the key issues, from the clinical and laborator y perspectives, related to the implementation and maintenance of neonatal screening programs in Europe, and to defi - ne consensuses for standardization of the neonatal screening of this disease in Europe. In spite of some previous initiatives for standardization of health care measures for these patients, a large heterogeneity was identified, which was also present for newborn screening policies and methodologies. More than 50 professionals with experience in the field of neonatal screening and sickle-cell disease, from 13 dif ferent countries, including Por tugal, were present in the conference, allowing a better knowledge on the European situation regarding SCD newborn screening, and contributed to the elaboration of the consensus published in 2018.
Descrição
Palavras-chave
Drepanocitose Rastreio Neonatal Doenças Genéticas Saúde Pública Portugal
Contexto Educativo
Citação
Boletim Epidemiológico Observações. 2019 maio-agosto;8(25):44-47
Editora
Instituto Nacional de Saúde Doutor Ricardo Jorge, IP