{"id":67627,"date":"2026-01-12T12:28:05","date_gmt":"2026-01-12T15:28:05","guid":{"rendered":"https:\/\/www.p31noticias.com.br\/?p=67627"},"modified":"2026-01-12T12:28:05","modified_gmt":"2026-01-12T15:28:05","slug":"hospital-da-crianca-de-brasilia-recebe-habilitacao-para-tratamentos-com-terapia-genica","status":"publish","type":"post","link":"https:\/\/www.p31noticias.com.br\/?p=67627","title":{"rendered":"Hospital da Crian\u00e7a de Bras\u00edlia recebe habilita\u00e7\u00e3o para tratamentos com terapia g\u00eanica"},"content":{"rendered":"

Decis\u00e3o do Minist\u00e9rio da Sa\u00fade beneficia crian\u00e7as com atrofia muscular espinhal<\/strong><\/em><\/p>\n

O Hospital da Crian\u00e7a de Bras\u00edlia Jos\u00e9 Alencar (HCB) recebeu habilita\u00e7\u00e3o do Minist\u00e9rio da Sa\u00fade para realiza\u00e7\u00e3o de terapia g\u00eanica. O HCB \u00e9 o \u00fanico hospital do Centro-Oeste e o \u00fanico com dedica\u00e7\u00e3o 100% pedi\u00e1trica a receber a habilita\u00e7\u00e3o: al\u00e9m dele, apenas o Hospital das Cl\u00ednicas de Porto Alegre (RS) e o Hospital de Cl\u00ednicas da Universidade Estadual de Campinas (SP) tamb\u00e9m foram autorizados a realizar esse tipo de tratamento no pa\u00eds.<\/p>\n

Segundo a coordenadora do servi\u00e7o de neuropediatria e respons\u00e1vel t\u00e9cnica pelo ambulat\u00f3rio de doen\u00e7as neuromusculares e terapias g\u00eanicas do HCB, Jana\u00edna Monteiro, a habilita\u00e7\u00e3o do hospital \u00e9 um reflexo de mudan\u00e7as nos protocolos cl\u00ednicos e diretrizes terap\u00eauticas (PCDT) do Minist\u00e9rio da Sa\u00fade. \u201cO PCDT incluiu as crian\u00e7as de at\u00e9 seis meses e definiu que elas teriam direito a fazer a terapia g\u00eanica. S\u00f3 que, no fluxo do minist\u00e9rio, s\u00f3 se pode infundir essa medica\u00e7\u00e3o nos centros habilitados que demonstrem ter os profissionais e as condi\u00e7\u00f5es adequadas de lidar com a terapia\u201d, explica Monteiro.<\/p>\n

\n

De perfil terci\u00e1rio e voltado ao tratamento de doen\u00e7as cr\u00f4nicas e complexas, o Hospital da Crian\u00e7a de Bras\u00edlia comprovou que sua estrutura f\u00edsica \u00e9 adequada para administrar terapia g\u00eanica e preparou a equipe que seria envolvida nesse tipo de tratamento. \u201cOs primeiros profissionais foram treinados: enfermeiros, m\u00e9dicos, farmac\u00eauticos. Tamb\u00e9m tivemos que apresentar toda a nossa estrutura de UTI e de fisioterapia\u201d, conta a neurologista. A primeira aplica\u00e7\u00e3o deste tipo de terapia no HCB foi realizada em maio de 2025, quando uma crian\u00e7a diagnosticada com atrofia muscular espinhal (AME) recebeu a medica\u00e7\u00e3o zolgensma.<\/p>\n

A AME \u00e9 uma doen\u00e7a gen\u00e9tica que afeta o neur\u00f4nio da medula espinhal e desencadeia um processo degenerativo e progressivo causada pela aus\u00eancia de uma prote\u00edna essencial para a sobreviv\u00eancia do neur\u00f4nio motor. A doen\u00e7a acomete o beb\u00ea ainda na fase gestacional e pode levar a \u00f3bito, em sua forma mais grave, ou fazer com que o paciente perca a capacidade de movimenta\u00e7\u00e3o e fique preso \u00e0 ventila\u00e7\u00e3o mec\u00e2nica, embora a intelig\u00eancia se mantenha preservada.<\/p>\n

<\/picture>\"\"<\/picture>
A terapia g\u00eanica utiliza um vetor viral e interfere no gene respons\u00e1vel pela produ\u00e7\u00e3o da prote\u00edna necess\u00e1ria para a sobreviv\u00eancia do neur\u00f4nio motor<\/figcaption><\/figure>\n

A terapia g\u00eanica utiliza um vetor viral e interfere no gene respons\u00e1vel pela produ\u00e7\u00e3o da prote\u00edna necess\u00e1ria para a sobreviv\u00eancia do neur\u00f4nio motor. \u00c9 importante que o diagn\u00f3stico seja precoce \u2014 por isso, desde 2021, a AME \u00e9 uma das doen\u00e7as detectadas pela triagem neonatal na rede p\u00fablica de sa\u00fade do Distrito Federal.<\/p>\n<\/div>\n

\n

O Hospital da Crian\u00e7a de Bras\u00edlia acompanha, atualmente, 50 pacientes com AME. Depois que a crian\u00e7a \u00e9 encaminhada ao HCB e diagnosticada, a equipe multidisciplinar inicia o tratamento, inclusive verificando se \u00e9 um caso eleg\u00edvel para o uso do zolgensma.\u00a0\u201cTemos exames pr\u00e9-infusionais, avaliando f\u00edgado, troponina, a parte card\u00edaca, para ver se a crian\u00e7a est\u00e1 clinicamente adequada para receber a terapia\u201d, explica Monteiro. Ap\u00f3s a infus\u00e3o do medicamento, o paciente tamb\u00e9m precisa fazer uso cr\u00f4nico de corticoide e \u00e9 monitorado semanalmente para acompanhar a resposta \u00e0 terapia g\u00eanica.<\/p>\n

\n

50<\/strong><\/p>\n

N\u00famero de pacientes com AME acompanhados atualmente pelo HCB<\/div>\n<\/div>\n

Embora n\u00e3o haja crian\u00e7as do Distrito Federal com prescri\u00e7\u00e3o do zolgensma atualmente, o HCB atende \u00e0s pessoas que v\u00eam de outros estados brasileiros. \u00c9 o caso de Romanna Duarte, sete meses, que veio de Mossor\u00f3 (RN) para Bras\u00edlia. \u201cCom um m\u00eas e meio, ela parou de mexer os bra\u00e7os e as pernas. Ela nasceu em maio e, dois meses depois, a gente teve o diagn\u00f3stico de atrofia muscular espinhal\u201d, relata a m\u00e3e de Romanna, Rayanna Duarte.<\/p>\n

Depois de receber o rem\u00e9dio, Romanna segue acompanhada pela equipe do HCB. \u201cAt\u00e9 o momento, ela tem reagido superbem. Depois da alta, vamos para um hotel e vamos passar alguns dias aqui para continuar acompanhando de pertinho, coletar exames. Caso haja alguma urg\u00eancia, a gente corre para c\u00e1, temos o cart\u00e3o vermelho\u201d, explica a m\u00e3e da beb\u00ea.<\/p>\n

Segundo Jana\u00edna Monteiro, a habilita\u00e7\u00e3o do HCB \u00e9 uma conquista: \u201cCome\u00e7amos a trabalhar com esse grupo de pacientes visando mais ao cuidado paliativo, com uma equipe multidisciplinar que se mant\u00e9m e que \u00e9 necess\u00e1ria at\u00e9 hoje, mas n\u00e3o t\u00ednhamos possibilidades de tratamento que modificasse a doen\u00e7a. Poder oferecer isso dentro do hospital p\u00fablico, tudo pelo SUS, realmente \u00e9 um sonho\u201d.<\/p>\n

Com informa\u00e7\u00f5es do HCB<\/em><\/strong><\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

Decis\u00e3o do Minist\u00e9rio da Sa\u00fade beneficia crian\u00e7as com atrofia muscular espinhal O Hospital da Crian\u00e7a de Bras\u00edlia Jos\u00e9 Alencar (HCB) recebeu habilita\u00e7\u00e3o do Minist\u00e9rio da Sa\u00fade para realiza\u00e7\u00e3o de terapia g\u00eanica. O HCB \u00e9 o \u00fanico hospital do Centro-Oeste e o \u00fanico com dedica\u00e7\u00e3o 100% pedi\u00e1trica a receber a habilita\u00e7\u00e3o: al\u00e9m dele, apenas o Hospital […]<\/p>\n","protected":false},"author":2,"featured_media":67628,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[68,21,57,124],"tags":[],"class_list":{"0":"post-67627","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-brasil","8":"category-brasilia","9":"category-politica","10":"category-saude"},"yoast_head":"\nHospital da Crian\u00e7a de Bras\u00edlia recebe habilita\u00e7\u00e3o para tratamentos com terapia g\u00eanica - P31<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.p31noticias.com.br\/?p=67627\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Hospital da Crian\u00e7a de Bras\u00edlia recebe habilita\u00e7\u00e3o para tratamentos com terapia g\u00eanica\" \/>\n<meta property=\"og:description\" content=\"Decis\u00e3o do Minist\u00e9rio da Sa\u00fade beneficia crian\u00e7as com atrofia muscular espinhal O Hospital da Crian\u00e7a de Bras\u00edlia Jos\u00e9 Alencar (HCB) recebeu habilita\u00e7\u00e3o do Minist\u00e9rio da Sa\u00fade para realiza\u00e7\u00e3o de terapia g\u00eanica. 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