{"id":3698,"date":"2021-10-28T09:31:35","date_gmt":"2021-10-28T16:31:35","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=3698"},"modified":"2024-03-24T20:46:03","modified_gmt":"2024-03-25T03:46:03","slug":"improving-outcome-measures-for-those-with-severe-epilepsies","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/es_cr\/research-participating-and-supporting\/improving-outcome-measures-for-those-with-severe-epilepsies\/","title":{"rendered":"Mejorar las medidas de resultados para quienes est\u00e1n gravemente afectados"},"content":{"rendered":"\"DEE-PCOMBINED\"\n

\n\t\tColaborando para acelerar las medidas de resultados para los m\u00e1s afectados\n\t<\/h2>\n\t

DEE-P COMBINED Coalition – DEE-P Connections (a partnership of 33 patient advocacy groups – PAGs) and COMBINADOcerebro<\/a> (un consorcio de 26 PAG) fueron los socios fundadores de esta iniciativa. Nos propusimos estudiar la literatura, evaluar las iniciativas en curso y desarrollar un plan de acciones para acelerar el progreso hacia medidas de resultados validadas para las EDE gravemente afectadas.<\/p>\n\t

Descripci\u00f3n general<\/b><\/h2>\n

Estamos construyendo una coalici\u00f3n de un amplio espectro de partes interesadas que colaboran para implementar una estrategia integrada para acelerar las medidas de resultados capaces de capturar mejoras significativas en todos los \u00e1mbitos para las poblaciones gravemente afectadas.\u00a0<\/p>\n

L\u00edmites de las iniciativas ad hoc actuales<\/b><\/h2>\n

Nuestro an\u00e1lisis del panorama revel\u00f3 que se est\u00e1n realizando muchos esfuerzos para comenzar a abordar las limitaciones de las herramientas y mediciones existentes. Grupos de enfermedades individuales est\u00e1n explorando estas cuestiones, investigadores individuales est\u00e1n estudiando medidas en trastornos seleccionados y entendemos perfectamente que esto ha sido por necesidad. Por muy prometedores que sean muchos de estos esfuerzos, no est\u00e1n coordinados y a menudo carecen de financiaci\u00f3n suficiente.<\/p>\n

Para que se logren avances significativos para todas las EDE, se necesitan esfuerzos para combinar la dedicaci\u00f3n, el compromiso y el compromiso de diversos desarrolladores y partes interesadas.<\/p>\n

Lograr una visi\u00f3n compartida de la necesidad de acelerar la mejora de las mediciones de resultados se mejorar\u00e1 de manera mensurable mediante la coordinaci\u00f3n de esfuerzos.\u00a0<\/p>\n

    \n
  • A TRAV\u00c9S DE ETIOLOG\u00cdAS y PAGS<\/li>\n
  • en EMPRESAS FARMAC\u00c9UTICAS INDIVIDUALES y<\/li>\n
  • a trav\u00e9s de ESFUERZOS DE INVESTIGACI\u00d3N Y DESARROLLO\u00a0<\/li>\n<\/ul>\n\t\t\t\t\"Matthew\n\t

    Objetivos<\/b><\/h2>\n

    Desarrollar un esfuerzo colaborativo para brindar un enfoque estrat\u00e9gico y coordinado a una campa\u00f1a para mejorar las medidas de resultados que capturen mejoras entre las poblaciones m\u00e1s gravemente afectadas. <\/b>We seek collaborators across the range of stakeholders – industry, researchers, and PAGS – to\u00a0\u00a0<\/p>\n

      \n
    • Reunir recursos e intelecto, <\/b>reunir voces y experiencias cr\u00edticas en una sola mesa, lo que optimizar\u00e1 el ritmo de progreso y \u00e9xito.<\/li>\n
    • Maximizar la eficiencia <\/b>– diverse stakeholders working concurrently to advance these, as well as other yet to be identified, tools eliminates the disease-by-disease, tool-by-tool process that drags out progress for the wider DEE\/severely affected population<\/li>\n
    • Evite un enfoque fragmentado y fragmentado <\/b>lo que retrasar\u00eda el progreso y limitar\u00eda el aprendizaje continuo.<\/li>\n
    • Establecer un enfoque colaborativo estrat\u00e9gico<\/b> que ser\u00e1 integral, hol\u00edstico y s\u00f3lido.<\/li>\n<\/ul>\n

      Proyectos prometedores para el apoyo colaborativo<\/b><\/h2>\n

      La fase de paisaje de nuestros esfuerzos de colaboraci\u00f3n ha identificado m\u00faltiples proyectos que est\u00e1n listos para adaptaci\u00f3n, ampliaci\u00f3n de escala o pruebas para exploraci\u00f3n por parte de posibles socios del consorcio, entre los que se incluyen:<\/p>\n

        \n
      • Adapting the Vineland – <\/b>Evaluar oportunidades para adaptar las caracter\u00edsticas de la herramienta Vineland a poblaciones severas en general; IP: Dra. Anne Berg<\/li>\n
      • Health-Related Quality of Life Scale for DEEs – <\/b>ampliar el Inventario de Calidad de Vida de las Discapacidades para incluir herramientas refinadas que reconozcan los diversos impactos de las discapacidades graves; IP: Dra. Jenny Downs en colaboraci\u00f3n con el equipo de Epilepsy Learning Healthcare System de Epilepsy Foundation<\/li>\n
      • Escala de logro de objetivos <\/b>– adaptation of existing tools already in use for clinical trials in rare epilepsies to go extend several\u00a0 standard deviations further; PI: Chere Chapman, Ardea Outcomes<\/li>\n
      • Escalas de rehabilitaci\u00f3n <\/b>– adaptation of broad measures and tools developed for rehabilitation of individuals with profound trauma for broad DEE populations; PI: Dr. Natasha Ludwig, Kennedy-Krieger Institute<\/li>\n
      • Mapa conceptual de la enfermedad final<\/b> de EDE severas seleccionadas para proporcionar una base confiable de desaf\u00edos de desempe\u00f1o y requisitos de medici\u00f3n en EDE severas; Investigador privado: Dr. Terry Jo Bichell<\/li>\n
      • Exploraci\u00f3n y documentaci\u00f3n continuas <\/b>– ongoing collaborative effort to evaluate additional emerging opportunities on critical issues such as CVI, sleep, etc.; PI: Gabi Conecker<\/li>\n<\/ul>\n

         <\/p>\n

        Get engaged – help end the floor effect now!<\/b><\/h2>\n\n

         <\/p>\n

        SOCIOS DE LA INDUSTRIA:<\/b><\/h3>\n

        Industry – particularly companies with potentially game-changing disease-altering new treatments in their pipeline, stand to experience early and significant payoffs from collaborating through the new Collaborative Effort.\u00a0<\/b><\/p>\n

          \n
        • Consult and collaborate with others confronting time-sensitive and high-stakes decisions on outcome measures\u00a0 – primary, secondary and exploratory – on imminent new clinical trials; get efficiently informed about cutting edge new options for new tools with promise to better capture potentially significant improved outcomes for those most severely affected by underlying diseases<\/li>\n
        • Desempe\u00f1ar un papel de liderazgo en la configuraci\u00f3n de la naturaleza y el enfoque de los esfuerzos de colaboraci\u00f3n para satisfacer mejor sus necesidades a largo plazo y m\u00e1s inmediatas.<\/li>\n
        • Cuando sea apropiado, trabajar en colaboraci\u00f3n para priorizar y acelerar la implementaci\u00f3n de las nuevas herramientas y medidas que resulten m\u00e1s rentables en desarrollo.<\/li>\n
        • Ayude a impulsar y acelerar el progreso hacia nuevas medidas validadas para los m\u00e1s gravemente afectados combinando la experiencia, el enfoque y el compromiso de una amplia gama de partes interesadas.<\/li>\n<\/ul>\n

          Proponemos que los socios corporativos, combinados, proporcionen entre $500.000 y $750.000 en financiaci\u00f3n inicial. <\/b>a formalizar una organizaci\u00f3n colaborativa operativa <\/b>que dirigir\u00e1, gestionar\u00e1, defender\u00e1 y desarrollar\u00e1 propuestas de investigaci\u00f3n completas y presupuestos para proyectos de la Fase II.\u00a0<\/p>\n

          Las contribuciones se pueden escalar seg\u00fan el tama\u00f1o de los intereses comerciales aplicables y la etapa de desarrollo (por ejemplo, todos los compuestos que a\u00fan se encuentran en fase cl\u00ednica frente a aquellos con flujos de ingresos existentes).<\/p>\n

          Las contribuciones individuales de la industria pueden variar desde un m\u00ednimo de $75.000 para peque\u00f1as empresas que a\u00fan se encuentran en la fase cl\u00ednica hasta $250.000 para corporaciones m\u00e1s grandes con una mayor cartera de proyectos y un flujo de ingresos existente.<\/p>\n

          El apoyo\/asociaci\u00f3n con 10 empresas proporcionar\u00eda una voz esencial de la industria, as\u00ed como una base sustantiva para avanzar en todos los elementos clave descritos anteriormente.<\/p>\n

          SOCIOS INVESTIGADORES:<\/b><\/h3>\n

          La participaci\u00f3n de investigadores que trabajan en herramientas nuevas y mejoradas que comparten el compromiso de mejorar la idoneidad para las poblaciones gravemente afectadas es fundamental para el \u00e9xito del esfuerzo colaborativo.<\/b>. Considere una variedad de beneficios al colaborar con otros en sus esfuerzos de investigaci\u00f3n y desarrollo actuales y planificados:<\/p>\n

            \n
          • Foro colegiado para coordinar y colaborar; Desarrollar un entorno de colaboraci\u00f3n cient\u00edfica en equipo para maximizar el impacto de los programas individuales.<\/li>\n
          • Expand your impact by participating in a collaborative approach with a “rising tide” effect<\/li>\n
          • Ser elegible para la evaluaci\u00f3n como proyecto de alta prioridad donde los socios del consorcio colaborar\u00e1n para asegurar financiamiento para la implementaci\u00f3n de proyectos seleccionados.<\/li>\n<\/ul>\n

             <\/p>\n

            SOCIOS DEFENSORES DEL PACIENTE:<\/b><\/h3>\n

            Patient advocate leaders will be the heart and soul of the Collaborative effort – it’s our children who all too often remain unseen, unmeasured, and off the radar in the evaluation of disease-altering treatments. <\/b>Los beneficios de ser miembro fundador podr\u00edan incluir:<\/p>\n

              \n
            • Maximize efficiencies – diverse stakeholders working concurrently to advance identified and other promising new tools\u00a0<\/li>\n
            • Aunar esfuerzos para coordinar, ampliar y adaptar los esfuerzos de desarrollo espec\u00edficos de enfermedades.<\/li>\n
            • Colaborar para acelerar nuevas medidas para promover su inclusi\u00f3n en pr\u00f3ximos ensayos cl\u00ednicos<\/li>\n<\/ul>\n\t\t\t\t\"inbound5559723848296493575\"\n\t\t\t\t\"DEEP\n\t

              El esfuerzo de colaboraci\u00f3n agradecer\u00e1 el compromiso de todos los socios que comparten el compromiso de acelerar las pruebas y la validaci\u00f3n de nuevas medidas de resultados para aquellos m\u00e1s gravemente afectados por enfermedades complejas. <\/b>Son bienvenidas las organizaciones de defensa amplia, las organizaciones de derechos de pacientes\/discapacitados, las asociaciones profesionales, las organizaciones gubernamentales clave y otras.<\/p>\n\n

              Estamos profundamente agradecidos con nuestros patrocinadores de la Fase I por permitir que comenzara este trabajo cr\u00edtico.<\/b><\/h2>\n

               <\/p>\n

              \n\t\tDonantes de apoyo\n\t<\/h2>\n\t\t\t\t\"praxis\n

              \n\t\tPatrocinadores\/Socios Donantes\n\t<\/h2>\n\t\t\t\t\"illumina\"\n\t\t\t\t\"illumina\"\n\t\t\t\t\"neurocrine_Logo_highres\"","protected":false},"excerpt":{"rendered":"

              Collaborating to Accelerate Outcome Measures for Severely Affected DEE-P COMBINED Coalition – DEE-P Connections (a partnership of 33 patient advocacy groups – PAGs) and COMBINEDBrain (a consortium of 26 PAGs)…<\/p>","protected":false},"author":4,"featured_media":0,"parent":2269,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-3698","page","type-page","status-publish","hentry"],"yoast_head":"\nImproving Outcome Measures for those who are Severely Affected - 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