A Sociedade Brasileira de Neurologia Infantil, em conjunto com a Sociedade Brasileira de Genética Médica e Genômica, manifestam-se em Nota Técnica sobre a consulta pública da Comissão Nacional de Incorporação de Tecnologias no SUS (CONITEC) ,publicada em 29 de agosto do ano corrente, referente à utilização do medicamento Nusinersena (nome comercial Spinraza®) para tratamento da Atrofia Muscular Espinhal 5q (AME-5).
No documento, além de diversas informações relevantes acerca da doença, seu diagnóstico e manejo, os especialistas do Grupo de Trabalho reforçam a necessidade de elaboração de Protocolo Clinico e Diretrizes Terapêuticas aplicado à realidade nacional, visando a equidade de acesso e o bom uso do tratamento pelos indivíduos que dela possam ter benefícios e, na sua ausência, indicações de prioridades clínicas para sua administração.
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Além do foco terapêutico da Nota Técnica, a Sociedade Brasileira de Genética Médica e Genômica e a Sociedade Brasileira de Neurologia Infantil reforçam, também, a importância de consulta com especialista para aconselhamento genético nas famílias em que a AME-5q tenha sido detectada.