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A Cure CLCN4 tem o orgulho de fazer parceria com a Simons Searchlight<\/strong> para hospedar um registro formal de pacientes com varia\u00e7\u00e3o do gene CLCN4. Convidamos todas as fam\u00edlias afetadas por essa altera\u00e7\u00e3o gen\u00e9tica a contribuir com o registro, para que possamos construir um formid\u00e1vel banco de informa\u00e7\u00f5es sobre essa importante doen\u00e7a. Um registro de pacientes \u00e9 parte indispens\u00e1vel da pesquisa – descubra por que abaixo. <\/p>\n [\/et_pb_text][et_pb_button button_url=”https:\/\/research.simonssearchlight.org\/account\/create” url_new_window=”on” button_text=”Inscreva-se em nosso registro de pacientes” button_alignment=”center” _builder_version=”4.16″ _module_preset=”default” custom_button=”on” button_text_color=”#FFFFFF” button_bg_color=”#12876F” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/03\/474FDE98-1F12-4324-BBDA-DF0DC03D6958.jpg” title_text=”474FDE98-1F12-4324-BBDA-DF0DC03D6958″ _builder_version=”4.16″ _module_preset=”default” width=”81%” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.16″ background_color=”#ffffff” max_width=”1200px” custom_padding=”30px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_blurb title=”Perguntas frequentes sobre o registro de pacientes” content_max_width=”700px” _builder_version=”4.27.0″ header_level=”h2″ header_font=”Faustina|700|||||||” header_text_align=”center” header_text_color=”#007162″ header_font_size=”40px” header_line_height=”2em” body_line_height=”2em” text_orientation=”justified” width=”100%” custom_padding=”0px||0px||false|false” link_option_url_new_window=”on” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.16″ background_color=”#ffffff” max_width=”1200px” custom_padding=”30px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_blurb title=”O que \u00e9 um registro de pacientes? ” content_max_width=”700px” _builder_version=”4.16″ header_level=”h1″ header_font=”|700|||||||” header_text_align=”justify” header_font_size=”20px” header_line_height=”2em” body_line_height=”2em” text_orientation=”justified” width=”100%” custom_padding=”0px||0px||false|false” link_option_url_new_window=”on” global_colors_info=”{}”]<\/p>\n Um registro de pacientes \u00e9 uma compila\u00e7\u00e3o organizada de informa\u00e7\u00f5es sobre indiv\u00edduos com uma condi\u00e7\u00e3o espec\u00edfica. Pense nele como um arm\u00e1rio de arquivos – ele cont\u00e9m todas as informa\u00e7\u00f5es dispon\u00edveis sobre indiv\u00edduos afetados por uma doen\u00e7a, de forma ordenada. Essas informa\u00e7\u00f5es podem ser sobre o hist\u00f3rico m\u00e9dico de cada paciente, hist\u00f3rico familiar, medicamentos e quaisquer altera\u00e7\u00f5es ao longo do tempo. Quando temos essas informa\u00e7\u00f5es sobre um conjunto de pacientes, podemos come\u00e7ar a elaborar padr\u00f5es de doen\u00e7as, faixas de gravidade, como os problemas evoluem com o tempo, estrat\u00e9gias de tratamento que funcionaram ou n\u00e3o. Esse \u00e9 o in\u00edcio da pesquisa m\u00e9dica. Os registros de pacientes atuam para direcionar a pesquisa cient\u00edfica para o que \u00e9 significativo para os indiv\u00edduos afetados e correlacionam o que vemos no laborat\u00f3rio com o que est\u00e1 acontecendo na vida real. Como tal, \u00e9 uma ferramenta fundamental para toda boa pesquisa m\u00e9dica. [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.16″ background_color=”#ffffff” max_width=”1200px” custom_padding=”30px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_blurb title=”Por que um registro de pacientes \u00e9 importante? ” content_max_width=”700px” _builder_version=”4.16″ header_level=”h1″ header_font=”|700|||||||” header_text_align=”justify” header_font_size=”20px” header_line_height=”2em” body_line_height=”2em” text_orientation=”justified” width=”100%” custom_padding=”0px||0px||false|false” link_option_url_new_window=”on” global_colors_info=”{}”]<\/p>\n Os registros de pacientes podem beneficiar pessoas com doen\u00e7as gen\u00e9ticas raras, como a CLCN4, por tr\u00eas motivos principais:<\/span><\/p>\n 1. Os registros de pacientes podem melhorar o atendimento ao paciente<\/strong><\/span><\/p>\n Quando se sabe mais sobre uma doen\u00e7a, mais informa\u00e7\u00f5es podem ser fornecidas \u00e0s fam\u00edlias rec\u00e9m-diagnosticadas, tratamentos mais eficazes podem ser disponibilizados e haver\u00e1 mais conhecimento sobre como usar esses tratamentos. Isso \u00e9 ainda mais importante em doen\u00e7as raras, como a CLCN4, em que nenhum m\u00e9dico teria visto um n\u00famero suficiente de casos para acumular a experi\u00eancia necess\u00e1ria. Com cada fam\u00edlia que compartilha sua experi\u00eancia e conhecimento, mais informa\u00e7\u00f5es ser\u00e3o adicionadas ao banco de conhecimento, melhorando o atendimento ao paciente coletivamente e tamb\u00e9m individualmente, pois o que uma fam\u00edlia compartilha pode acabar ajudando outra. <\/span><\/p>\n 2. Os registros amplificam sua voz<\/strong><\/span><\/p>\n Nosso registro pedir\u00e1 que voc\u00ea d\u00ea seu ponto de vista sobre assuntos importantes relacionados a voc\u00ea ou a seu filho. Por exemplo, solicitando sua opini\u00e3o sobre quais sintomas s\u00e3o mais importantes para encontrar tratamentos ou sobre quais tratamentos existentes voc\u00ea gostaria que houvesse mais informa\u00e7\u00f5es. Compartilhar o seu ponto de vista \u00e9 extremamente importante, pois ajuda as ag\u00eancias de financiamento de pesquisa, as empresas farmac\u00eauticas, as ag\u00eancias reguladoras e as organiza\u00e7\u00f5es de pacientes a aprender como atender melhor \u00e0s suas necessidades. Exigir que os pesquisadores ou\u00e7am e atendam aos interesses dos pacientes est\u00e1 se tornando cada vez mais comum e um pr\u00e9-requisito para a obten\u00e7\u00e3o de financiamento ou para a aprova\u00e7\u00e3o de medicamentos. <\/span><\/p>\n 3. Os registros aumentam as chances de desenvolvimento de medicamentos<\/strong><\/span><\/p>\n N\u00e3o h\u00e1 como evitar, o desenvolvimento de medicamentos \u00e9 dif\u00edcil, demorado e caro. As empresas farmac\u00eauticas s\u00e3o muito mais atra\u00eddas a desenvolver novas terapias para comunidades de doen\u00e7as raras que j\u00e1 t\u00eam registros de doen\u00e7as raras com dados \u00fateis e fam\u00edlias que optaram por participar de testes cl\u00ednicos. Isso lhes poupa muito tempo e despesas e permite maiores chances de sucesso com a aprova\u00e7\u00e3o regulat\u00f3ria. <\/span><\/p>\n <\/span><\/p>\n <\/span><\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.16″ background_color=”#ffffff” max_width=”1200px” custom_padding=”30px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_blurb title=”O Registry compartilhar\u00e1 meus dados pessoais? ” content_max_width=”700px” _builder_version=”4.16″ header_level=”h1″ header_font=”|700|||||||” header_text_align=”justify” header_font_size=”20px” header_line_height=”2em” body_line_height=”2em” text_orientation=”justified” width=”100%” custom_padding=”0px||0px||false|false” link_option_url_new_window=”on” global_colors_info=”{}”]<\/p>\n Todas as pesquisas m\u00e9dicas s\u00e3o regidas por regras regulat\u00f3rias rigorosas e precisam ser aprovadas por um conselho de \u00e9tica nomeado antes de prosseguir. Um registro de pacientes n\u00e3o \u00e9 exce\u00e7\u00e3o. Seus dados ser\u00e3o mantidos em seguran\u00e7a e seus dados identific\u00e1veis (como nome, localiza\u00e7\u00e3o, detalhes de contato) N\u00c3O ser\u00e3o compartilhados com nenhum pesquisador, empresa farmac\u00eautica ou com o p\u00fablico em geral, a menos que voc\u00ea d\u00ea seu consentimento expl\u00edcito para uma finalidade espec\u00edfica. <\/span><\/p>\n <\/span><\/p>\n <\/strong><\/span><\/p>\n <\/strong><\/span><\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.16″ background_color=”#ffffff” max_width=”1200px” custom_padding=”30px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_blurb title=”E quanto ao recrutamento para estudos cl\u00ednicos?” content_max_width=”700px” _builder_version=”4.16″ header_level=”h1″ header_font=”|700|||||||” header_text_align=”justify” header_font_size=”20px” header_line_height=”2em” body_line_height=”2em” text_orientation=”justified” width=”100%” custom_padding=”0px||0px||false|false” link_option_url_new_window=”on” global_colors_info=”{}”]<\/p>\n Inscrever-se no registro de pacientes e compartilhar suas informa\u00e7\u00f5es n\u00e3o significa comprometer-se a participar de estudos cl\u00ednicos. Haver\u00e1 um processo separado para recrutar pacientes para estudos espec\u00edficos quando chegar a hora. Ao se inscrever para participar do registro de pacientes, voc\u00ea ter\u00e1 a oportunidade de optar por ser contatado quando um estudo cl\u00ednico for aberto para recrutamento. Voc\u00ea ser\u00e1 aconselhado sobre os detalhes de cada estudo por m\u00e9rito pr\u00f3prio e ter\u00e1 a op\u00e7\u00e3o de participar ou n\u00e3o. <\/span><\/p>\n <\/span><\/p>\n <\/strong><\/span><\/p>\n <\/strong><\/span><\/p>\n [\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”on|phone” _builder_version=”4.16″ background_color=”#ffffff” max_width=”1200px” custom_padding=”30px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_blurb title=”Como fa\u00e7o para me inscrever no registro de pacientes e do que preciso? ” url_new_window=”on” content_max_width=”700px” _builder_version=”4.16″ header_level=”h1″ header_font=”|700|||||||” header_text_align=”justify” header_font_size=”20px” header_line_height=”2em” body_line_height=”2em” text_orientation=”justified” width=”100%” custom_padding=”0px||0px||false|false” link_option_url_new_window=”on” global_colors_info=”{}”]<\/p>\n Nosso registro de pacientes \u00e9 hospedado pela Simons Searchlight<\/a>, uma iniciativa de pesquisa com a miss\u00e3o de avan\u00e7ar na investiga\u00e7\u00e3o de altera\u00e7\u00f5es gen\u00e9ticas ligadas ao autismo e ao atraso no desenvolvimento neurol\u00f3gico. A participa\u00e7\u00e3o envolve o registro on-line no Simons Searchlight, o envio de um relat\u00f3rio de laborat\u00f3rio de gen\u00e9tica (se voc\u00ea o tiver) e uma entrevista telef\u00f4nica de 60 a 90 minutos com um dos conselheiros gen\u00e9ticos do Simons, que o orientar\u00e1 sobre as perguntas relevantes. Eles tamb\u00e9m pedir\u00e3o sua permiss\u00e3o para entrar em contato com voc\u00ea anualmente para atualizar as informa\u00e7\u00f5es, para que tenham um registro de como as coisas mudam ao longo do tempo. <\/span><\/p>\n Para se inscrever no registro de pacientes do CLCN4, assista a este v\u00eddeo de apresenta\u00e7\u00e3o da Simons Searchlight e, quando voc\u00ea estiver pronto para come\u00e7ar, clique <\/span>clique aqui<\/a>. <\/span> <\/p>\n Se voc\u00ea tiver alguma d\u00favida sobre o processo de inscri\u00e7\u00e3o, poder\u00e1 encontrar respostas nas Perguntas frequentes<\/a> da Simons Searchlight ou, como alternativa, poder\u00e1 entrar em contato diretamente com eles. <\/a> <\/span><\/p>\n [\/et_pb_blurb][et_pb_video src=”https:\/\/www.youtube.com\/watch?v=n5e5AKPcKKw” _builder_version=”4.16″ _module_preset=”default” max_width=”70%” module_alignment=”center” global_colors_info=”{}”][\/et_pb_video][\/et_pb_column][\/et_pb_row][et_pb_row 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<\/span><\/p>\nPatrocinadores corporativos da Funda\u00e7\u00e3o<\/h2>\n
Entre em contacto. Envolver-se.<\/h2>\n