{"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\/nb_no\/research-participating-and-supporting\/improving-outcome-measures-for-those-with-severe-epilepsies\/","title":{"rendered":"Forbedre resultatm\u00e5l for de som er sterkt ber\u00f8rt"},"content":{"rendered":"\"DEE-PCOMBINED\"\n

\n\t\tSamarbeide for \u00e5 akselerere utfallstiltak for sterkt ber\u00f8rte\n\t<\/h2>\n\t

DEE-P COMBINED Coalition – DEE-P Connections (a partnership of 33 patient advocacy groups – PAGs) and COMBINEDBrain<\/a> (et konsortium p\u00e5 26 PAG-er) var grunnleggerne av dette initiativet. Vi satte oss for \u00e5 kartlegge litteraturen, vurdere p\u00e5g\u00e5ende initiativer og utvikle en bl\u00e5kopi for handlinger for \u00e5 akselerere fremdriften mot validerte resultatm\u00e5l for alvorlig ber\u00f8rte DEEs.<\/p>\n\t

Oversikt<\/b><\/h2>\n

Vi bygger en koalisjon av et bredt spekter av interessenter som samarbeider for \u00e5 f\u00f8lge en integrert strategi for \u00e5 akselerere resultatm\u00e5l som er i stand til \u00e5 fange opp meningsfulle forbedringer p\u00e5 alle domener for sterkt ber\u00f8rte befolkninger.\u00a0<\/p>\n

Begrensninger for n\u00e5v\u00e6rende ad hoc-initiativer<\/b><\/h2>\n

V\u00e5r landskapsanalyse avsl\u00f8rte at mange anstrengelser er i gang for \u00e5 begynne \u00e5 adressere begrensningene til eksisterende verkt\u00f8y og m\u00e5linger. Individuelle sykdomsgrupper utforsker disse sp\u00f8rsm\u00e5lene, individuelle forskere studerer tiltak for utvalgte lidelser, og vi har full forst\u00e5else for at dette har v\u00e6rt av n\u00f8dvendighet. S\u00e5 lovende som mange av disse innsatsene er, er de ukoordinerte og ofte underfinansierte.<\/p>\n

For \u00e5 gj\u00f8re betydelige fremskritt for alle DEE-er, er det n\u00f8dvendig med innsats for \u00e5 kombinere engasjement, engasjement og engasjement fra ulike utviklere og interessenter.<\/p>\n

\u00c5 oppn\u00e5 en felles visjon om behovet for \u00e5 akselerere for Forbedrede resultatm\u00e5linger vil bli m\u00e5lbart forbedret ved at innsatsen koordineres\u00a0<\/p>\n

    \n
  • p\u00e5 tvers av ETIOLOGIER og PAGS<\/li>\n
  • p\u00e5 tvers av INDIVIDUELLE PHARMASELSKAPER og<\/li>\n
  • p\u00e5 tvers av FORSKNINGS- OG UTVIKLINGSINNSATS\u00a0<\/li>\n<\/ul>\n\t\t\t\t\"Matthew\n\t

    M\u00e5l<\/b><\/h2>\n

    Utvikle en samarbeidsinnsats for \u00e5 bringe et strategisk og koordinert fokus til et fors\u00f8k p\u00e5 \u00e5 forbedre resultatm\u00e5l som fanger opp forbedringer blant de hardest rammede befolkningene. <\/b>We seek collaborators across the range of stakeholders – industry, researchers, and PAGS – to\u00a0\u00a0<\/p>\n

      \n
    • Samle ressurser og intellekt, <\/b>bringe kritiske stemmer og erfaringer til et enkelt bord, noe som vil optimere hastigheten p\u00e5 fremgang og suksess.<\/li>\n
    • Maksimer effektiviteten <\/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
    • Unng\u00e5 en brukket, stykkevis tiln\u00e6rming <\/b>som ville forsinke fremdriften og begrense kontinuerlig l\u00e6ring.<\/li>\n
    • Etabler en strategisk samarbeidstiln\u00e6rming<\/b> som vil v\u00e6re omfattende, helhetlig og robust.<\/li>\n<\/ul>\n

      Lovende prosjekter for samarbeidsst\u00f8tte<\/b><\/h2>\n

      Landskapsfasen av v\u00e5rt samarbeid har identifisert flere prosjekter som er klare for tilpasning, utvidet skalering eller testing for utforskning av potensielle konsortiumpartnere inkluderer:<\/p>\n

        \n
      • Adapting the Vineland – <\/b>Evaluere mulighetene for \u00e5 tilpasse funksjonene til Vineland-verkt\u00f8yet til de bredere alvorlige populasjonene; PI: Dr. Anne Berg<\/li>\n
      • Health-Related Quality of Life Scale for DEEs – <\/b>utvide livskvalitetsinventaret over funksjonshemninger til \u00e5 inkludere raffinerte verkt\u00f8y som gjenkjenner ulike virkninger av alvorlige funksjonshemminger; PI: Dr. Jenny Downs i samarbeid med Epilepsy Foundation Epilepsy Learning Healthcare System-teamet<\/li>\n
      • Skalering av m\u00e5loppn\u00e5else <\/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
      • Rehabiliteringsvekter <\/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
      • Endelig sykdomskonseptkart<\/b> av utvalgte alvorlige DEE-er for \u00e5 gi p\u00e5litelig grunnlinje for ytelsesutfordringer og m\u00e5lekrav i alvorlige DEE-er; PI: Dr. Terry Jo Bichell<\/li>\n
      • L\u00f8pende speiding og dokumentasjon <\/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

        INDUSTRIPARTNERE:<\/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
        • Spill en ledende rolle i \u00e5 forme arten og fokuset til samarbeidsarbeidet for best mulig \u00e5 m\u00f8te deres langsiktige og mer umiddelbare behov<\/li>\n
        • N\u00e5r det er hensiktsmessig, samarbeide for \u00e5 prioritere og fremskynde implementeringen av den h\u00f8yeste gevinsten nye verkt\u00f8y og tiltak under utvikling<\/li>\n
        • Bidra til \u00e5 sette i gang og akselerere fremgangen mot nye validerte tiltak for de hardest rammede ved \u00e5 kombinere ekspertisen, fokuset og engasjementet til det brede spekteret av interessenter.<\/li>\n<\/ul>\n

          Vi foresl\u00e5r at bedriftspartnere til sammen gir $500.000-$750.000 i startfinansiering <\/b>til formalisere en operativ samarbeidsorganisasjon <\/b>som vil lede, administrere, forkjempe og utvikle fullstendige forskningsforslag og budsjetter for fase II-prosjekter.\u00a0<\/p>\n

          Bidrag kan skaleres til st\u00f8rrelsen p\u00e5 gjeldende kommersielle interesser og utviklingsstadium (f.eks. alle forbindelser som fortsatt er i klinisk fase kontra de med eksisterende inntektsstr\u00f8mmer).<\/p>\n

          Individuelle industribidrag kan variere fra minimum $75 000 for sm\u00e5 selskaper som fortsatt er i den kliniske fasen til $250 000 for st\u00f8rre selskaper med en st\u00f8rre pipeline og en eksisterende inntektsstr\u00f8m.<\/p>\n

          St\u00f8tte\/partnerskap med 10 selskaper vil gi en viktig industristemme, s\u00e5 vel som et vesentlig grunnlag for \u00e5 komme videre p\u00e5 alle n\u00f8kkelelementene som er skissert ovenfor.<\/p>\n

          FORSKERSPARTNERE:<\/b><\/h3>\n

          Deltakelse av forskere som jobber med nye og forbedrede verkt\u00f8y som deler en forpliktelse til \u00e5 forbedre egnetheten for sterkt ber\u00f8rte befolkninger er sentralt for suksessen til samarbeidsarbeidet<\/b>. Vurder en rekke fordeler ved \u00e5 samarbeide med andre i din n\u00e5v\u00e6rende og planlagte forsknings- og utviklingsinnsats:<\/p>\n

            \n
          • Kollegialt forum for \u00e5 koordinere og samarbeide; utvikle et team-vitenskapelig milj\u00f8 for samarbeid for \u00e5 maksimere effekten av individuelle programmer<\/li>\n
          • Expand your impact by participating in a collaborative approach with a “rising tide” effect<\/li>\n
          • Bli kvalifisert for vurdering som et h\u00f8yt prioritert prosjekt der konsortiepartnere vil samarbeide for \u00e5 sikre finansiering for gjennomf\u00f8ring av utvalgte prosjekter<\/li>\n<\/ul>\n

             <\/p>\n

            PASIENT ADVOCAT PARTNERE:<\/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>Fordeler ved \u00e5 v\u00e6re et grunnleggende medlem kan omfatte:<\/p>\n

              \n
            • Maximize efficiencies – diverse stakeholders working concurrently to advance identified and other promising new tools\u00a0<\/li>\n
            • Samle innsats for \u00e5 koordinere, utvide og tilpasse sykdomsspesifikk utviklingsinnsats<\/li>\n
            • Samarbeid for \u00e5 fremskynde nye tiltak for \u00e5 fremme inkludering i kommende kliniske studier<\/li>\n<\/ul>\n\t\t\t\t\"inbound5559723848296493575\"\n\t\t\t\t\"DEEP\n\t

              Samarbeidet vil \u00f8nske engasjement fra alle partnere som deler forpliktelsen til \u00e5 akselerere testing og validering av nye resultatm\u00e5l for de som er hardest rammet av komplekse sykdommer. <\/b>Brede p\u00e5virkningsorganisasjoner, organisasjoner for pasienter\/funksjonshemmingsrettigheter, profesjonelle foreninger, sentrale statlige organisasjoner og andre er velkomne.<\/p>\n\n

              Vi er dypt takknemlige til v\u00e5re Fase I-sponsorer for \u00e5 la dette kritiske arbeidet komme i gang.<\/b><\/h2>\n

               <\/p>\n

              \n\t\tSt\u00f8tte givere\n\t<\/h2>\n\t\t\t\t\"praxis\n

              \n\t\tPatron\/partnergivere\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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