{"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\/pt\/research-participating-and-supporting\/improving-outcome-measures-for-those-with-severe-epilepsies\/","title":{"rendered":"Melhorando as medidas de resultados para aqueles que s\u00e3o gravemente afetados"},"content":{"rendered":"\"DEE-PCOMBINED\"\n

\n\t\tColaborando para acelerar medidas de resultados para pessoas gravemente afetadas\n\t<\/h2>\n\t

DEE-P COMBINED Coalition – DEE-P Connections (a partnership of 33 patient advocacy groups – PAGs) and COMBINADO C\u00e9rebro<\/a> (um cons\u00f3rcio de 26 PAGs) foram os parceiros fundadores desta iniciativa. Decidimos pesquisar a literatura, avaliar as iniciativas em curso e desenvolver um modelo de a\u00e7\u00f5es para acelerar o progresso em dire\u00e7\u00e3o a medidas de resultados validadas para DEEs gravemente afetados.<\/p>\n\t

Vis\u00e3o geral<\/b><\/h2>\n

Estamos a construir uma coliga\u00e7\u00e3o de um amplo espectro de partes interessadas que colaboram na prossecu\u00e7\u00e3o de uma estrat\u00e9gia integrada para acelerar medidas de resultados capazes de captar melhorias significativas em todos os dom\u00ednios para as popula\u00e7\u00f5es gravemente afectadas.\u00a0<\/p>\n

Limites das atuais iniciativas ad hoc<\/b><\/h2>\n

A nossa an\u00e1lise paisag\u00edstica revelou que est\u00e3o em curso muitos esfor\u00e7os para come\u00e7ar a abordar as limita\u00e7\u00f5es das ferramentas e medi\u00e7\u00f5es existentes. Grupos de doen\u00e7as individuais est\u00e3o a explorar estas quest\u00f5es, investigadores individuais est\u00e3o a estudar medidas em doen\u00e7as selecionadas, e compreendemos perfeitamente que isto n\u00e3o foi necess\u00e1rio. Por mais promissores que sejam muitos destes esfor\u00e7os, s\u00e3o descoordenados e muitas vezes subfinanciados.<\/p>\n

Para que sejam alcan\u00e7ados progressos significativos em todos os DEE, s\u00e3o necess\u00e1rios esfor\u00e7os para combinar a dedica\u00e7\u00e3o, o envolvimento e o compromisso de diversos promotores e partes interessadas.<\/p>\n

Alcan\u00e7ar uma vis\u00e3o partilhada da necessidade de acelerar a melhoria das medi\u00e7\u00f5es dos resultados ser\u00e1 melhorada de forma mensur\u00e1vel pelos esfor\u00e7os que est\u00e3o a ser coordenados\u00a0<\/p>\n

    \n
  • em ACROSS ETIOLOGIES e PAGS<\/li>\n
  • em EMPRESAS FARMAC\u00caUTICAS INDIVIDUAIS e<\/li>\n
  • em todos os ESFOR\u00c7OS DE PESQUISA E DESENVOLVIMENTO\u00a0<\/li>\n<\/ul>\n\t\t\t\t\"Matthew\n\t

    Metas<\/b><\/h2>\n

    Desenvolver um esfor\u00e7o colaborativo para dar um enfoque estrat\u00e9gico e coordenado a um esfor\u00e7o para melhorar medidas de resultados que captem melhorias entre as popula\u00e7\u00f5es mais 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>trazendo vozes e experi\u00eancias cr\u00edticas para uma \u00fanica mesa, o que otimizar\u00e1 a taxa de progresso e sucesso.<\/li>\n
    • Maximize a efici\u00eancia <\/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 uma abordagem fragmentada e fragmentada <\/b>o que atrasaria o progresso e limitaria a aprendizagem cont\u00ednua.<\/li>\n
    • Estabele\u00e7a uma abordagem colaborativa estrat\u00e9gica<\/b> que ser\u00e1 abrangente, hol\u00edstico e robusto.<\/li>\n<\/ul>\n

      Projetos promissores para suporte colaborativo<\/b><\/h2>\n

      A fase de paisagem dos nossos esfor\u00e7os colaborativos identificou v\u00e1rios projetos que est\u00e3o prontos para adapta\u00e7\u00e3o, amplia\u00e7\u00e3o ampliada ou testes para explora\u00e7\u00e3o por potenciais parceiros do cons\u00f3rcio, incluindo:<\/p>\n

        \n
      • Adapting the Vineland – <\/b>Avaliar oportunidades para adaptar caracter\u00edsticas da ferramenta Vineland \u00e0s popula\u00e7\u00f5es graves mais amplas; PI: Dra.<\/li>\n
      • Health-Related Quality of Life Scale for DEEs – <\/b>ampliar o Invent\u00e1rio de Qualidade de Vida de Defici\u00eancias para incluir ferramentas refinadas que reconhe\u00e7am diversos impactos de defici\u00eancias graves; PI: Dra. Jenny Downs em colabora\u00e7\u00e3o com a equipe do Epilepsy Foundation Epilepsy Learning Healthcare System<\/li>\n
      • Dimensionamento de cumprimento de metas <\/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
      • Balan\u00e7as de Reabilita\u00e7\u00e3o <\/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 conceitual final da doen\u00e7a<\/b> de DEEs graves selecionados para fornecer uma linha de base confi\u00e1vel de desafios de desempenho e requisitos de medi\u00e7\u00e3o em DEEs graves; PI: Dr.<\/li>\n
      • Escotismo e Documenta\u00e7\u00e3o Cont\u00ednuos <\/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

        PARCEIROS DA IND\u00daSTRIA:<\/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
        • Desempenhar um papel de lideran\u00e7a na defini\u00e7\u00e3o da natureza e do foco dos esfor\u00e7os colaborativos para melhor atender \u00e0s suas necessidades mais imediatas e de longo prazo<\/li>\n
        • Quando apropriado, trabalhar em colabora\u00e7\u00e3o para priorizar e acelerar a implementa\u00e7\u00e3o das novas ferramentas e medidas de maior retorno em desenvolvimento<\/li>\n
        • Ajudar a impulsionar e acelerar o progresso em dire\u00e7\u00e3o a novas medidas validadas para as pessoas mais gravemente afetadas, combinando a experi\u00eancia, o foco e o compromisso da ampla gama de partes interessadas.<\/li>\n<\/ul>\n

          Propomos que os parceiros corporativos, combinados, forne\u00e7am $500.000-$750.000 em financiamento inicial <\/b>para formalizar uma organiza\u00e7\u00e3o colaborativa operacional <\/b>que ir\u00e1 dirigir, gerenciar, defender e desenvolver propostas completas de pesquisa e or\u00e7amentos para projetos da Fase II.\u00a0<\/p>\n

          As contribui\u00e7\u00f5es podem ser dimensionadas de acordo com o tamanho dos interesses comerciais aplic\u00e1veis e o est\u00e1gio de desenvolvimento (por exemplo, todos os compostos ainda em fase cl\u00ednica versus aqueles com fluxos de receita existentes).<\/p>\n

          As contribui\u00e7\u00f5es individuais da ind\u00fastria podem variar de um m\u00ednimo de $75.000 para pequenas empresas ainda em fase cl\u00ednica a $250.000 para grandes empresas com um pipeline maior e um fluxo de receitas existente.<\/p>\n

          O apoio\/parceria com 10 empresas proporcionaria uma voz essencial \u00e0 ind\u00fastria, bem como uma base substantiva para avan\u00e7ar em todos os elementos-chave descritos acima.<\/p>\n

          PARCEIROS PESQUISADORES:<\/b><\/h3>\n

          A participa\u00e7\u00e3o de investigadores que trabalham em ferramentas novas e melhoradas, partilhando o compromisso de melhorar a adequa\u00e7\u00e3o \u00e0s popula\u00e7\u00f5es gravemente afetadas, \u00e9 fundamental para o sucesso do esfor\u00e7o colaborativo<\/b>. Considere uma s\u00e9rie de benef\u00edcios em colaborar com outras pessoas em seus esfor\u00e7os atuais e planejados de pesquisa e desenvolvimento:<\/p>\n

            \n
          • F\u00f3rum colegiado de coordena\u00e7\u00e3o e colabora\u00e7\u00e3o; desenvolver um ambiente de colabora\u00e7\u00e3o cient\u00edfica em equipe para maximizar o impacto de programas individuais<\/li>\n
          • Expand your impact by participating in a collaborative approach with a “rising tide” effect<\/li>\n
          • Torne-se eleg\u00edvel para avalia\u00e7\u00e3o como um projeto de alta prioridade onde os parceiros do cons\u00f3rcio colaborar\u00e3o para garantir financiamento para a implementa\u00e7\u00e3o dos projetos selecionados<\/li>\n<\/ul>\n

             <\/p>\n

            PARCEIROS ADVOGADOS DO 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>Os benef\u00edcios de ser um membro fundador podem incluir:<\/p>\n

              \n
            • Maximize efficiencies – diverse stakeholders working concurrently to advance identified and other promising new tools\u00a0<\/li>\n
            • Reunir esfor\u00e7os para coordenar, ampliar e adaptar os esfor\u00e7os de desenvolvimento espec\u00edficos de doen\u00e7as<\/li>\n
            • Colaborar para acelerar novas medidas para promover a inclus\u00e3o nos pr\u00f3ximos ensaios cl\u00ednicos<\/li>\n<\/ul>\n\t\t\t\t\"inbound5559723848296493575\"\n\t\t\t\t\"DEEP\n\t

              O esfor\u00e7o colaborativo acolher\u00e1 favoravelmente o envolvimento de todos os parceiros que partilhem o compromisso de acelerar os testes e a valida\u00e7\u00e3o de novas medidas de resultados para as pessoas mais gravemente afectadas por doen\u00e7as complexas. <\/b>Organiza\u00e7\u00f5es amplas de defesa, organiza\u00e7\u00f5es pelos direitos dos pacientes\/deficientes, associa\u00e7\u00f5es profissionais, organiza\u00e7\u00f5es governamentais importantes e outras s\u00e3o bem-vindas.<\/p>\n\n

              Estamos profundamente gratos aos nossos patrocinadores da Fase I por permitirem o in\u00edcio deste trabalho cr\u00edtico.<\/b><\/h2>\n

               <\/p>\n

              \n\t\tApoiando Doadores\n\t<\/h2>\n\t\t\t\t\"praxis\n

              \n\t\tDoadores Patrocinadores\/Parceiros\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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