{"id":27938,"date":"2020-04-28T14:53:58","date_gmt":"2020-04-28T18:53:58","guid":{"rendered":"https:\/\/nephcure.org\/you-can-change-fsgs-treatment-options-el-pfdd-2020\/"},"modified":"2025-12-11T07:36:40","modified_gmt":"2025-12-11T12:36:40","slug":"puedes-cambiar-las-opciones-de-tratamiento-fsgs-el-pfdd-2020","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/you-can-change-fsgs-treatment-options-el-pfdd-2020\/","title":{"rendered":"Puede cambiar las opciones de tratamiento de FSGS: EL-PFDD 2020"},"content":{"rendered":"

Las reuniones de desarrollo de medicamentos centrado en el paciente (EL-PFDD), dirigidas externamente, re\u00fanen a pacientes y socios de atenci\u00f3n m\u00e9dica, representantes de la Administraci\u00f3n de Alimentos y Medicamentos de los EE. UU. (FDA), compa\u00f1\u00edas farmac\u00e9uticas y m\u00e9dicos expertos en una enfermedad en particular. El objetivo es escuchar a los pacientes que padecen la enfermedad, para que la FDA y las compa\u00f1\u00edas farmac\u00e9uticas comprendan la experiencia del paciente.\"\"<\/strong><\/em><\/p>\n

Este a\u00f1o, NephCure Kidney International y la National Kidney Foundation se unir\u00e1n para realizar un Reuni\u00f3n EL-PFDD<\/a>, el 28 de agosto de 2020, para informar a la FDA sobre la perspectiva del paciente de vivir con esclerosis glomerular focal y segmentaria (FSGS)<\/a>. La reuni\u00f3n se llevar\u00e1 a cabo en l\u00ednea. Invitamos a asistir a esta reuni\u00f3n a cualquier persona que tenga GEFS, viva con alguien afectado por ella o est\u00e9 interesado en ella.\u00a0<\/strong><\/em><\/p>\n

La reuni\u00f3n de EL-PFDD de este a\u00f1o sobre FSGS estar\u00e1 copresidida por dos Especialistas en NephCure<\/a>, Dres. Laura Mariani y Suneel Udani. Los dos responden a las siguientes preguntas sobre la importancia de la asistencia de los pacientes a la reuni\u00f3n de agosto.<\/strong><\/em><\/p>\n

 <\/p>\n

Como paciente con GEFS, \u00bfpor qu\u00e9 deber\u00eda considerar asistir a esta reuni\u00f3n?<\/strong>\u00a0<\/strong><\/p>\n

\"\"
Copresidente de EL-PFDD y especialista en NephCure, Dr. Suneel Udani<\/em><\/figcaption><\/figure>\n

Debido a que la GEFS es poco com\u00fan, la mayor\u00eda de las personas que dise\u00f1an y eval\u00faan los resultados de los ensayos cl\u00ednicos que prueban nuevos medicamentos no han conocido a nadie con GEFS. Si bien los m\u00e9dicos que atienden a pacientes con GEFS comprenden el impacto que la enfermedad tiene en sus vidas, este impacto no es algo que siempre pueda captarse en un an\u00e1lisis de sangre u orina y, por lo tanto, los reguladores que determinan qu\u00e9 medicamento estar\u00e1 disponible pueden no reconocer los problemas que los pacientes enfrentan cada d\u00eda.<\/p>\n

Esta reuni\u00f3n es su oportunidad de explicar no s\u00f3lo el impacto de la enfermedad, sino tambi\u00e9n las limitaciones de nuestras terapias actuales. La experiencia de cada paciente es \u00fanica, por lo que escuchar a tantas personas diferentes como sea posible es incre\u00edblemente \u00fatil.<\/p>\n

Le animamos a compartir no s\u00f3lo lo que t\u00fa<\/em> No s\u00f3lo le gustar\u00eda, sino tambi\u00e9n lo que esperar\u00eda de los nuevos tratamientos en t\u00e9rminos de c\u00f3mo se administran, durante cu\u00e1nto tiempo se debe tomar el medicamento, los efectos secundarios o cualquier otra cosa que crea que ser\u00eda relevante para los nuevos tratamientos. Cada segmento de la comunidad m\u00e9dica (cl\u00ednicos, investigadores, l\u00edderes de la industria) se beneficia al escuchar su perspectiva para que los nuevos tratamientos disponibles realmente satisfagan las necesidades de la poblaci\u00f3n prevista: usted.<\/p>\n

La reuni\u00f3n EL-PFDD es un escenario \u00fanico donde todos estos grupos (pacientes, m\u00e9dicos, cient\u00edficos, industria y reguladores) se re\u00fanen para escuchar. Por lo tanto, su asistencia y conocimiento son dependientes y vitales para el \u00e9xito de esta reuni\u00f3n.<\/span><\/p>\n

\u00a0<\/strong><\/p>\n

\u00bfC\u00f3mo contribuye esta reuni\u00f3n a poner nuevos medicamentos para la GEFS en las farmacias?<\/strong><\/p>\n

\"\"
Copresidenta de EL-PFDD y especialista en NephCure, Dra. Laura Mariani<\/em><\/figcaption><\/figure>\n

Los comentarios de la reuni\u00f3n pueden informar a la FDA sobre la necesidad urgente de opciones de tratamiento nuevas, m\u00e1s efectivas y menos t\u00f3xicas para la GEFS. La FDA intenta tender un puente sobre la comunicaci\u00f3n entre los pacientes y la comunidad m\u00e9dica. La FDA tiene como objetivo desarrollar criterios que no s\u00f3lo representen la efectividad de las terapias, sino que tambi\u00e9n determinen si estas terapias realmente ayudan a las personas a sentirse mejor. Al recopilar comentarios de los pacientes, Esta reuni\u00f3n ayudar\u00e1 a las empresas a dise\u00f1ar mejores estudios para evaluar los s\u00edntomas m\u00e1s relevantes para los pacientes y ayudar\u00e1 a la FDA a interpretar los resultados de esos estudios teniendo en cuenta las necesidades del paciente.<\/span><\/p>\n


\n\u00bfPor qu\u00e9 la Administraci\u00f3n de Alimentos y Medicamentos quiere escuchar a los pacientes?<\/strong><\/p>\n

La FDA reconoce que los pacientes y sus familiares son los expertos en c\u00f3mo es vivir con FSGS y tomar los medicamentos actualmente aprobados. Esta reuni\u00f3n puede ayudar a la FDA a comprender mejor el impacto de la enfermedad y sus tratamientos en los pacientes.<\/span><\/p>\n

\u00a0<\/strong><\/p>\n

Como m\u00e9dico, \u00bfpor qu\u00e9 cree que es importante la EL-PFDD?<\/strong><\/p>\n

\u201cComo m\u00e9dico, me he sentido frustrado con las opciones de tratamiento para el s\u00edndrome nefr\u00f3tico desde que supe cu\u00e1les eran, qu\u00e9 tan efectivas (o no) son y los efectos secundarios que les pedimos a los pacientes que toleren. Sin embargo, por primera vez en nuestra historia, hay m\u00e1s candidatos a tratamientos y estudios para investigar su impacto. El potencial de m\u00faltiples terapias nuevas ha cambiado mi perspectiva. Mientras que en el pasado nuestro list\u00f3n para entusiasmarnos con un nuevo tratamiento era simplemente si ten\u00eda un impacto en las pruebas de laboratorio anormales, ahora tenemos que elevar el list\u00f3n no s\u00f3lo para mejorar las pruebas de laboratorio, sino tambi\u00e9n para ver qu\u00e9 tan efectivo es un tratamiento para ayudar. alguien con la enfermedad vive mejor. Nunca podremos tener esa percepci\u00f3n sin la voz del paciente. En lugar de escuchar sobre la experiencia de los pacientes despu\u00e9s <\/em>"Una vez aprobado un nuevo medicamento, EL-PFDD brinda una oportunidad para que las voces de los pacientes realmente den forma a la narrativa y se aseguren de que el proceso de aprobaci\u00f3n incluya la perspectiva de quienes viven con la enfermedad y lo que es importante para ellos". -Dr. Suneel Udani<\/strong><\/em><\/p>\n

\u201cQuiero poder ofrecer a los pacientes terapias m\u00e1s efectivas y menos t\u00f3xicas para la GEFS. Para lograrlo, debemos reducir las barreras en cada paso del proceso de desarrollo y aprobaci\u00f3n de medicamentos. Escuchar directamente a los pacientes es la mejor manera para que nuestros socios en este proceso comprendan la urgencia de la necesidad en esta \u00e1rea y nos ayuden a todos a mejorar las vidas de los pacientes que viven con FSGS\u201d. \u2013 Dra. Laura Mariani<\/strong><\/em><\/p>\n

 <\/p>\n

Para registrarse para la reuni\u00f3n de EL-PFDD de este a\u00f1o centrada en FSGS el 28 de agosto de 2020, haga clic en aqu\u00ed<\/a>.\u00a0<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"

Las reuniones de desarrollo de medicamentos centrado en el paciente (EL-PFDD), dirigidas externamente, re\u00fanen a pacientes y socios de atenci\u00f3n m\u00e9dica, representantes de la Administraci\u00f3n de Alimentos y Medicamentos de los EE. UU. (FDA), compa\u00f1\u00edas farmac\u00e9uticas y m\u00e9dicos expertos en el particular... Leer m\u00e1s<\/a><\/p>","protected":false},"author":222,"featured_media":27939,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[354],"tags":[],"disease-category":[],"resource-type":[260],"treatment-option":[],"hf_cat_post":[],"class_list":["post-27938","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-recent-news","resource-type-news"],"acf":[],"yoast_head":"\nYou Can Change FSGS Treatment Options: EL-PFDD 2020<\/title>\n<meta name=\"description\" content=\"Learn how FSGS treatment options can change with insights from EL-PFDD 2020. 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