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Rastreio neonatal da drepanocitose na Europa: observações e consensos de uma reunião pan-europeia
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Authors
Advisor(s)
Abstract(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.
Description
Keywords
Drepanocitose Rastreio Neonatal Doenças Genéticas Saúde Pública Portugal
Pedagogical Context
Citation
Boletim Epidemiológico Observações. 2019 maio-agosto;8(25):44-47
Publisher
Instituto Nacional de Saúde Doutor Ricardo Jorge, IP