{"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\/mk_mk\/research-participating-and-supporting\/improving-outcome-measures-for-those-with-severe-epilepsies\/","title":{"rendered":"\u041f\u043e\u0434\u043e\u0431\u0440\u0443\u0432\u0430\u045a\u0435 \u043d\u0430 \u043c\u0435\u0440\u043a\u0438\u0442\u0435 \u0437\u0430 \u0438\u0441\u0445\u043e\u0434\u043e\u0442 \u0437\u0430 \u043e\u043d\u0438\u0435 \u043a\u043e\u0438 \u0441\u0435 \u0441\u0435\u0440\u0438\u043e\u0437\u043d\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438"},"content":{"rendered":"\"DEE-PCOMBINED\"\n

\n\t\t\u0421\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430 \u0437\u0430 \u0434\u0430 \u0441\u0435 \u0437\u0430\u0431\u0440\u0437\u0430\u0430\u0442 \u043c\u0435\u0440\u043a\u0438\u0442\u0435 \u0437\u0430 \u0438\u0441\u0445\u043e\u0434\u043e\u0442 \u0437\u0430 \u0441\u0435\u0440\u0438\u043e\u0437\u043d\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438\u0442\u0435\n\t<\/h2>\n\t

DEE-P COMBINED Coalition – DEE-P Connections (a partnership of 33 patient advocacy groups – PAGs) and \u041a\u041e\u041c\u0411\u0418\u041d\u0418\u0420\u0410\u041d \u041c\u043e\u0437\u043e\u043a<\/a> (\u043a\u043e\u043d\u0437\u043e\u0440\u0446\u0438\u0443\u043c \u043e\u0434 26 PAG) \u0431\u0435\u0430 \u043e\u0441\u043d\u043e\u0432\u0430\u0447\u043a\u0438 \u043f\u0430\u0440\u0442\u043d\u0435\u0440\u0438 \u043d\u0430 \u043e\u0432\u0430\u0430 \u0438\u043d\u0438\u0446\u0438\u0458\u0430\u0442\u0438\u0432\u0430. \u0422\u0440\u0433\u043d\u0430\u0432\u043c\u0435 \u0434\u0430 \u0458\u0430 \u0438\u0441\u043f\u0438\u0442\u0430\u043c\u0435 \u043b\u0438\u0442\u0435\u0440\u0430\u0442\u0443\u0440\u0430\u0442\u0430, \u0434\u0430 \u0433\u0438 \u043f\u0440\u043e\u0446\u0435\u043d\u0438\u043c\u0435 \u0442\u0435\u043a\u043e\u0432\u043d\u0438\u0442\u0435 \u0438\u043d\u0438\u0446\u0438\u0458\u0430\u0442\u0438\u0432\u0438 \u0438 \u0434\u0430 \u0440\u0430\u0437\u0432\u0438\u0435\u043c\u0435 \u043f\u043b\u0430\u043d \u0437\u0430 \u0430\u043a\u0442\u0438\u0432\u043d\u043e\u0441\u0442\u0438 \u0437\u0430 \u0437\u0430\u0431\u0440\u0437\u0443\u0432\u0430\u045a\u0435 \u043d\u0430 \u043d\u0430\u043f\u0440\u0435\u0434\u043e\u043a\u043e\u0442 \u043a\u043e\u043d \u043f\u043e\u0442\u0432\u0440\u0434\u0435\u043d\u0438 \u0438\u0441\u0445\u043e\u0434\u043d\u0438 \u043c\u0435\u0440\u043a\u0438 \u0437\u0430 \u0441\u0435\u0440\u0438\u043e\u0437\u043d\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438\u0442\u0435 DEE.<\/p>\n\t

\u041f\u0440\u0435\u0433\u043b\u0435\u0434<\/b><\/h2>\n

\u0413\u0440\u0430\u0434\u0438\u043c\u0435 \u043a\u043e\u0430\u043b\u0438\u0446\u0438\u0458\u0430 \u043e\u0434 \u0448\u0438\u0440\u043e\u043a \u0441\u043f\u0435\u043a\u0442\u0430\u0440 \u043d\u0430 \u0437\u0430\u0441\u0435\u0433\u043d\u0430\u0442\u0438 \u0441\u0442\u0440\u0430\u043d\u0438 \u043a\u043e\u0438 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u0443\u0432\u0430\u0430\u0442 \u0437\u0430 \u0434\u0430 \u043f\u0440\u043e\u0434\u043e\u043b\u0436\u0438\u043c\u0435 \u0441\u043e \u0438\u043d\u0442\u0435\u0433\u0440\u0438\u0440\u0430\u043d\u0430 \u0441\u0442\u0440\u0430\u0442\u0435\u0433\u0438\u0458\u0430 \u0437\u0430 \u0434\u0430 \u0433\u0438 \u0437\u0430\u0431\u0440\u0437\u0430\u043c\u0435 \u043c\u0435\u0440\u043a\u0438\u0442\u0435 \u0437\u0430 \u0438\u0441\u0445\u043e\u0434\u043e\u0442 \u0441\u043f\u043e\u0441\u043e\u0431\u043d\u0438 \u0434\u0430 \u0434\u043e\u043b\u043e\u0432\u0430\u0442 \u0437\u043d\u0430\u0447\u0430\u0458\u043d\u0438 \u043f\u043e\u0434\u043e\u0431\u0440\u0443\u0432\u0430\u045a\u0430 \u0432\u043e \u0441\u0438\u0442\u0435 \u0434\u043e\u043c\u0435\u043d\u0438 \u0437\u0430 \u0441\u0435\u0440\u0438\u043e\u0437\u043d\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438\u0442\u0435 \u043f\u043e\u043f\u0443\u043b\u0430\u0446\u0438\u0438.\u00a0<\/p>\n

\u0413\u0440\u0430\u043d\u0438\u0446\u0438 \u043d\u0430 \u0442\u0435\u043a\u043e\u0432\u043d\u0438\u0442\u0435 \u0430\u0434 \u0445\u043e\u043a \u0438\u043d\u0438\u0446\u0438\u0458\u0430\u0442\u0438\u0432\u0438<\/b><\/h2>\n

\u041d\u0430\u0448\u0430\u0442\u0430 \u0430\u043d\u0430\u043b\u0438\u0437\u0430 \u043d\u0430 \u043f\u0435\u0458\u0437\u0430\u0436\u043e\u0442 \u043e\u0442\u043a\u0440\u0438 \u0434\u0435\u043a\u0430 \u0432\u043e \u0442\u0435\u043a \u0441\u0435 \u043c\u043d\u043e\u0433\u0443 \u043d\u0430\u043f\u043e\u0440\u0438 \u0437\u0430 \u0434\u0430 \u0441\u0435 \u0437\u0430\u043f\u043e\u0447\u043d\u0435 \u0441\u043e \u0440\u0435\u0448\u0430\u0432\u0430\u045a\u0435 \u043d\u0430 \u043e\u0433\u0440\u0430\u043d\u0438\u0447\u0443\u0432\u0430\u045a\u0430\u0442\u0430 \u043d\u0430 \u043f\u043e\u0441\u0442\u043e\u0435\u0447\u043a\u0438\u0442\u0435 \u0430\u043b\u0430\u0442\u043a\u0438 \u0438 \u043c\u0435\u0440\u0435\u045a\u0430. \u0418\u043d\u0434\u0438\u0432\u0438\u0434\u0443\u0430\u043b\u043d\u0438\u0442\u0435 \u0433\u0440\u0443\u043f\u0438 \u043d\u0430 \u0431\u043e\u043b\u0435\u0441\u0442\u0438 \u0433\u0438 \u0438\u0441\u0442\u0440\u0430\u0436\u0443\u0432\u0430\u0430\u0442 \u043e\u0432\u0438\u0435 \u043f\u0440\u0430\u0448\u0430\u045a\u0430, \u043f\u043e\u0435\u0434\u0438\u043d\u0435\u0447\u043d\u0438 \u0438\u0441\u0442\u0440\u0430\u0436\u0443\u0432\u0430\u0447\u0438 \u0433\u0438 \u043f\u0440\u043e\u0443\u0447\u0443\u0432\u0430\u0430\u0442 \u043c\u0435\u0440\u043a\u0438\u0442\u0435 \u0437\u0430 \u043e\u0434\u0440\u0435\u0434\u0435\u043d\u0438 \u043d\u0430\u0440\u0443\u0448\u0443\u0432\u0430\u045a\u0430 \u0438 \u043d\u0438\u0435 \u0446\u0435\u043b\u043e\u0441\u043d\u043e \u0440\u0430\u0437\u0431\u0438\u0440\u0430\u043c\u0435 \u0434\u0435\u043a\u0430 \u043e\u0432\u0430 \u0435 \u043e\u0434 \u043f\u043e\u0442\u0440\u0435\u0431\u0430. \u041a\u043e\u043b\u043a\u0443 \u0438 \u0434\u0430 \u0432\u0435\u0442\u0443\u0432\u0430\u0430\u0442 \u043c\u043d\u043e\u0433\u0443 \u043e\u0434 \u043e\u0432\u0438\u0435 \u043d\u0430\u043f\u043e\u0440\u0438, \u0442\u0438\u0435 \u0441\u0435 \u043d\u0435\u043a\u043e\u043e\u0440\u0434\u0438\u043d\u0438\u0440\u0430\u043d\u0438 \u0438 \u0447\u0435\u0441\u0442\u043e \u043d\u0435\u0434\u043e\u0432\u043e\u043b\u043d\u043e \u0444\u0438\u043d\u0430\u043d\u0441\u0438\u0440\u0430\u043d\u0438.<\/p>\n

\u0417\u0430 \u0434\u0430 \u0441\u0435 \u043f\u043e\u0441\u0442\u0438\u0433\u043d\u0435 \u0437\u043d\u0430\u0447\u0438\u0442\u0435\u043b\u0435\u043d \u043d\u0430\u043f\u0440\u0435\u0434\u043e\u043a \u0437\u0430 \u0441\u0438\u0442\u0435 DEE, \u043f\u043e\u0442\u0440\u0435\u0431\u043d\u0438 \u0441\u0435 \u043d\u0430\u043f\u043e\u0440\u0438 \u0437\u0430 \u043a\u043e\u043c\u0431\u0438\u043d\u0438\u0440\u0430\u045a\u0435 \u043d\u0430 \u043f\u043e\u0441\u0432\u0435\u0442\u0435\u043d\u043e\u0441\u0442\u0430, \u0430\u043d\u0433\u0430\u0436\u043c\u0430\u043d\u043e\u0442 \u0438 \u043f\u043e\u0441\u0432\u0435\u0442\u0435\u043d\u043e\u0441\u0442\u0430 \u043d\u0430 \u0440\u0430\u0437\u043b\u0438\u0447\u043d\u0438\u0442\u0435 \u0440\u0430\u0437\u0432\u0438\u0432\u0430\u0447\u0438 \u0438 \u0437\u0430\u0441\u0435\u0433\u043d\u0430\u0442\u0438 \u0441\u0442\u0440\u0430\u043d\u0438.<\/p>\n

\u041f\u043e\u0441\u0442\u0438\u0433\u043d\u0443\u0432\u0430\u045a\u0435\u0442\u043e \u043d\u0430 \u0437\u0430\u0435\u0434\u043d\u0438\u0447\u043a\u0430 \u0432\u0438\u0437\u0438\u0458\u0430 \u0437\u0430 \u043f\u043e\u0442\u0440\u0435\u0431\u0430\u0442\u0430 \u043e\u0434 \u0437\u0430\u0431\u0440\u0437\u0443\u0432\u0430\u045a\u0435 \u0437\u0430 \u043f\u043e\u0434\u043e\u0431\u0440\u0435\u043d\u0438 \u043c\u0435\u0440\u0435\u045a\u0430 \u043d\u0430 \u0438\u0441\u0445\u043e\u0434\u043e\u0442 \u045c\u0435 \u0431\u0438\u0434\u0435 \u043c\u0435\u0440\u043b\u0438\u0432\u043e \u043f\u043e\u0434\u043e\u0431\u0440\u0435\u043d\u043e \u0441\u043e \u043a\u043e\u043e\u0440\u0434\u0438\u043d\u0438\u0440\u0430\u043d\u0438 \u043d\u0430\u043f\u043e\u0440\u0438\u00a0<\/p>\n

    \n
  • \u043d\u0438\u0437 ACROSS ETIOLOGIES \u0438 PAGS<\/li>\n
  • \u043d\u0438\u0437 \u0418\u041d\u0414\u0418\u0412\u0418\u0414\u0423\u0410\u041b\u041d\u0418 \u0424\u0410\u0420\u041c\u0410 \u041a\u041e\u041c\u041f\u0410\u041d\u0418\u0418 \u0438<\/li>\n
  • \u043d\u0438\u0437 \u0418\u0421\u0422\u0420\u0410\u0416\u0423\u0412\u0410\u0427\u041a\u0418 \u0418 \u0420\u0410\u0417\u0412\u041e\u0408\u041d\u0418 \u041d\u0410\u041f\u041e\u0412\u0418\u00a0<\/li>\n<\/ul>\n\t\t\t\t\"Matthew\n\t

    \u0426\u0435\u043b\u0438<\/b><\/h2>\n

    \u0420\u0430\u0437\u0432\u0438\u0458\u0442\u0435 \u0437\u0430\u0435\u0434\u043d\u0438\u0447\u043a\u0438 \u043d\u0430\u043f\u043e\u0440 \u0437\u0430 \u0434\u0430 \u0441\u0435 \u0434\u043e\u043d\u0435\u0441\u0435 \u0441\u0442\u0440\u0430\u0442\u0435\u0448\u043a\u0438 \u0438 \u043a\u043e\u043e\u0440\u0434\u0438\u043d\u0438\u0440\u0430\u043d \u0444\u043e\u043a\u0443\u0441 \u043d\u0430 \u043d\u0430\u043f\u043e\u0440\u0438\u0442\u0435 \u0434\u0430 \u0441\u0435 \u043f\u043e\u0434\u043e\u0431\u0440\u0430\u0442 \u043c\u0435\u0440\u043a\u0438\u0442\u0435 \u0437\u0430 \u0438\u0441\u0445\u043e\u0434\u043e\u0442 \u0448\u0442\u043e \u043e\u0432\u043e\u0437\u043c\u043e\u0436\u0443\u0432\u0430\u0430\u0442 \u043f\u043e\u0434\u043e\u0431\u0440\u0443\u0432\u0430\u045a\u0430 \u043a\u0430\u0458 \u043d\u0430\u0458\u0442\u0435\u0448\u043a\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438\u0442\u0435 \u043f\u043e\u043f\u0443\u043b\u0430\u0446\u0438\u0438. <\/b>We seek collaborators across the range of stakeholders – industry, researchers, and PAGS – to\u00a0\u00a0<\/p>\n

      \n
    • \u0417\u0434\u0440\u0443\u0436\u0435\u0442\u0435 \u0440\u0435\u0441\u0443\u0440\u0441\u0438 \u0438 \u0438\u043d\u0442\u0435\u043b\u0435\u043a\u0442, <\/b>\u0434\u043e\u043d\u0435\u0441\u0443\u0432\u0430\u045a\u0435 \u043a\u0440\u0438\u0442\u0438\u0447\u043a\u0438 \u0433\u043b\u0430\u0441\u043e\u0432\u0438 \u0438 \u0438\u0441\u043a\u0443\u0441\u0442\u0432\u0430 \u043d\u0430 \u0435\u0434\u043d\u0430 \u043c\u0430\u0441\u0430, \u0448\u0442\u043e \u045c\u0435 \u0458\u0430 \u043e\u043f\u0442\u0438\u043c\u0438\u0437\u0438\u0440\u0430 \u0441\u0442\u0430\u043f\u043a\u0430\u0442\u0430 \u043d\u0430 \u043d\u0430\u043f\u0440\u0435\u0434\u043e\u043a \u0438 \u0443\u0441\u043f\u0435\u0445.<\/li>\n
    • \u041c\u0430\u043a\u0441\u0438\u043c\u0438\u0437\u0438\u0440\u0430\u0458\u0442\u0435 \u0458\u0430 \u0435\u0444\u0438\u043a\u0430\u0441\u043d\u043e\u0441\u0442\u0430 <\/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
    • \u0418\u0437\u0431\u0435\u0433\u043d\u0443\u0432\u0430\u0458\u0442\u0435 \u0444\u0440\u0430\u043a\u0442\u0443\u0440\u0438\u0440\u0430\u043d, \u043f\u043e\u0434\u0435\u043b\u0435\u043d \u043f\u0440\u0438\u0441\u0442\u0430\u043f <\/b>\u0448\u0442\u043e \u0431\u0438 \u0433\u043e \u043e\u0434\u043b\u043e\u0436\u0438\u043b\u043e \u043d\u0430\u043f\u0440\u0435\u0434\u043e\u043a\u043e\u0442 \u0438 \u0431\u0438 \u0433\u043e \u043e\u0433\u0440\u0430\u043d\u0438\u0447\u0438\u043b\u043e \u043a\u043e\u043d\u0442\u0438\u043d\u0443\u0438\u0440\u0430\u043d\u043e\u0442\u043e \u0443\u0447\u0435\u045a\u0435.<\/li>\n
    • \u0412\u043e\u0441\u043f\u043e\u0441\u0442\u0430\u0432\u0435\u0442\u0435 \u0441\u0442\u0440\u0430\u0442\u0435\u0448\u043a\u0438 \u043f\u0440\u0438\u0441\u0442\u0430\u043f \u0437\u0430 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430<\/b> \u043a\u043e\u0458 \u045c\u0435 \u0431\u0438\u0434\u0435 \u0441\u0435\u043e\u043f\u0444\u0430\u0442\u0435\u043d, \u0445\u043e\u043b\u0438\u0441\u0442\u0438\u0447\u043a\u0438 \u0438 \u0440\u043e\u0431\u0443\u0441\u0442\u0435\u043d.<\/li>\n<\/ul>\n

      \u0412\u0435\u0442\u0443\u0432\u0430\u0447\u043a\u0438 \u043f\u0440\u043e\u0435\u043a\u0442\u0438 \u0437\u0430 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430 \u0437\u0430 \u043f\u043e\u0434\u0434\u0440\u0448\u043a\u0430<\/b><\/h2>\n

      \u0424\u0430\u0437\u0430\u0442\u0430 \u043d\u0430 \u043f\u0435\u0458\u0437\u0430\u0436\u043e\u0442 \u043d\u0430 \u043d\u0430\u0448\u0438\u0442\u0435 \u0437\u0430\u0435\u0434\u043d\u0438\u0447\u043a\u0438 \u043d\u0430\u043f\u043e\u0440\u0438 \u0438\u0434\u0435\u043d\u0442\u0438\u0444\u0438\u043a\u0443\u0432\u0430\u0448\u0435 \u043f\u043e\u0432\u0435\u045c\u0435 \u043f\u0440\u043e\u0435\u043a\u0442\u0438 \u043a\u043e\u0438 \u0441\u0435 \u043f\u043e\u0434\u0433\u043e\u0442\u0432\u0435\u043d\u0438 \u0437\u0430 \u0430\u0434\u0430\u043f\u0442\u0430\u0446\u0438\u0458\u0430, \u043f\u0440\u043e\u0434\u043e\u043b\u0436\u0435\u043d\u043e \u0441\u043a\u0430\u043b\u0438\u0440\u0430\u045a\u0435 \u0438\u043b\u0438 \u0442\u0435\u0441\u0442\u0438\u0440\u0430\u045a\u0435 \u0437\u0430 \u0438\u0441\u0442\u0440\u0430\u0436\u0443\u0432\u0430\u045a\u0435 \u043e\u0434 \u043f\u043e\u0442\u0435\u043d\u0446\u0438\u0458\u0430\u043b\u043d\u0438 \u043f\u0430\u0440\u0442\u043d\u0435\u0440\u0438 \u043e\u0434 \u043a\u043e\u043d\u0437\u043e\u0440\u0446\u0438\u0443\u043c\u043e\u0442 \u0432\u043a\u043b\u0443\u0447\u0443\u0432\u0430\u0430\u0442:<\/p>\n

        \n
      • Adapting the Vineland – <\/b>\u041e\u0446\u0435\u043d\u0435\u0442\u0435 \u0433\u0438 \u043c\u043e\u0436\u043d\u043e\u0441\u0442\u0438\u0442\u0435 \u0437\u0430 \u043f\u0440\u0438\u0441\u043f\u043e\u0441\u043e\u0431\u0443\u0432\u0430\u045a\u0435 \u043d\u0430 \u043a\u0430\u0440\u0430\u043a\u0442\u0435\u0440\u0438\u0441\u0442\u0438\u043a\u0438\u0442\u0435 \u043d\u0430 \u0430\u043b\u0430\u0442\u043a\u0430\u0442\u0430 Vineland \u043d\u0430 \u043f\u043e\u0448\u0438\u0440\u043e\u043a\u0438\u0442\u0435 \u0442\u0435\u0448\u043a\u0438 \u043f\u043e\u043f\u0443\u043b\u0430\u0446\u0438\u0438; \u041f.\u0418.: \u0414-\u0440 \u0410\u043d\u0430 \u0411\u0435\u0440\u0433<\/li>\n
      • Health-Related Quality of Life Scale for DEEs – <\/b>\u0434\u0430 \u0441\u0435 \u043f\u0440\u043e\u0448\u0438\u0440\u0438 \u0418\u043d\u0432\u0435\u043d\u0442\u0430\u0440\u043e\u0442 \u043d\u0430 \u043f\u043e\u043f\u0440\u0435\u0447\u0435\u043d\u043e\u0441\u0442 \u043d\u0430 \u043a\u0432\u0430\u043b\u0438\u0442\u0435\u0442\u043e\u0442 \u043d\u0430 \u0436\u0438\u0432\u043e\u0442\u043e\u0442 \u0437\u0430 \u0434\u0430 \u0432\u043a\u043b\u0443\u0447\u0438 \u0440\u0430\u0444\u0438\u043d\u0438\u0440\u0430\u043d\u0438 \u0430\u043b\u0430\u0442\u043a\u0438 \u043a\u043e\u0438 \u043f\u0440\u0435\u043f\u043e\u0437\u043d\u0430\u0432\u0430\u0430\u0442 \u0440\u0430\u0437\u043b\u0438\u0447\u043d\u0438 \u0432\u043b\u0438\u0458\u0430\u043d\u0438\u0458\u0430 \u043e\u0434 \u0442\u0435\u0448\u043a\u0438\u0442\u0435 \u043f\u043e\u043f\u0440\u0435\u0447\u0435\u043d\u043e\u0441\u0442\u0438; PI: \u0414-\u0440 \u040f\u0435\u043d\u0438 \u0414\u0430\u0443\u043d\u0441 \u0432\u043e \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430 \u0441\u043e Epilepsy Foundation Epilepsy Learning Healthcare System<\/li>\n
      • \u0421\u043a\u0430\u043b\u0438\u0440\u0430\u045a\u0435 \u043d\u0430 \u043f\u043e\u0441\u0442\u0438\u0433\u043d\u0443\u0432\u0430\u045a\u0435 \u0446\u0435\u043b <\/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
      • \u0412\u0430\u0433\u0430 \u0437\u0430 \u0440\u0435\u0445\u0430\u0431\u0438\u043b\u0438\u0442\u0430\u0446\u0438\u0458\u0430 <\/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
      • \u041a\u043e\u043d\u0435\u0447\u043d\u0430 \u043c\u0430\u043f\u0430 \u043d\u0430 \u043a\u043e\u043d\u0446\u0435\u043f\u0442\u043e\u0442 \u043d\u0430 \u0431\u043e\u043b\u0435\u0441\u0442\u0430<\/b> \u043d\u0430 \u043e\u0434\u0440\u0435\u0434\u0435\u043d\u0438 \u0442\u0435\u0448\u043a\u0438 DEE \u0437\u0430 \u0434\u0430 \u0441\u0435 \u043e\u0431\u0435\u0437\u0431\u0435\u0434\u0438 \u0441\u0438\u0433\u0443\u0440\u043d\u0430 \u043e\u0441\u043d\u043e\u0432\u0430 \u0437\u0430 \u043f\u0440\u0435\u0434\u0438\u0437\u0432\u0438\u0446\u0438\u0442\u0435 \u043d\u0430 \u0438\u0437\u0432\u0435\u0434\u0431\u0430\u0442\u0430 \u0438 \u0431\u0430\u0440\u0430\u045a\u0430\u0442\u0430 \u0437\u0430 \u043c\u0435\u0440\u0435\u045a\u0435 \u043a\u0430\u0458 \u0442\u0435\u0448\u043a\u0438 DEE; \u041f\u0418: \u0414-\u0440 \u0422\u0435\u0440\u0438 \u040f\u043e \u0411\u0438\u0447\u0435\u043b<\/li>\n
      • \u0422\u0435\u043a\u043e\u0432\u043d\u043e \u0438\u0437\u0432\u0438\u0434\u0443\u0432\u0430\u045a\u0435 \u0438 \u0434\u043e\u043a\u0443\u043c\u0435\u043d\u0442\u0430\u0446\u0438\u0458\u0430 <\/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

        \u0418\u041d\u0414\u0423\u0421\u0422\u0420\u0418\u0421\u041a\u0418 \u041f\u0410\u0420\u0422\u041d\u0415\u0420\u0418:<\/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
        • \u0418\u0433\u0440\u0430\u0458\u0442\u0435 \u0432\u043e\u0434\u0435\u0447\u043a\u0430 \u0443\u043b\u043e\u0433\u0430 \u0432\u043e \u043e\u0431\u043b\u0438\u043a\u0443\u0432\u0430\u045a\u0435\u0442\u043e \u043d\u0430 \u043f\u0440\u0438\u0440\u043e\u0434\u0430\u0442\u0430 \u0438 \u0444\u043e\u043a\u0443\u0441\u043e\u0442 \u043d\u0430 \u043d\u0430\u043f\u043e\u0440\u0438\u0442\u0435 \u0437\u0430 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430 \u043d\u0430\u0458\u0434\u043e\u0431\u0440\u043e \u0434\u0430 \u0441\u0435 \u0437\u0430\u0434\u043e\u0432\u043e\u043b\u0430\u0442 \u043d\u0438\u0432\u043d\u0438\u0442\u0435 \u0434\u043e\u043b\u0433\u043e\u0440\u043e\u0447\u043d\u0438 \u0438 \u043f\u043e\u043d\u0435\u043f\u043e\u0441\u0440\u0435\u0434\u043d\u0438 \u043f\u043e\u0442\u0440\u0435\u0431\u0438<\/li>\n
        • \u041a\u043e\u0433\u0430 \u0435 \u0441\u043e\u043e\u0434\u0432\u0435\u0442\u043d\u043e, \u0440\u0430\u0431\u043e\u0442\u0435\u0442\u0435 \u0437\u0430\u0435\u0434\u043d\u0438\u0447\u043a\u0438 \u0437\u0430 \u0434\u0430 \u0441\u0435 \u0434\u0430\u0434\u0435 \u043f\u0440\u0438\u043e\u0440\u0438\u0442\u0435\u0442 \u0438 \u0434\u0430 \u0441\u0435 \u0437\u0430\u0431\u0440\u0437\u0430 \u0438\u043c\u043f\u043b\u0435\u043c\u0435\u043d\u0442\u0430\u0446\u0438\u0458\u0430\u0442\u0430 \u043d\u0430 \u043d\u043e\u0432\u0438\u0442\u0435 \u0430\u043b\u0430\u0442\u043a\u0438 \u0438 \u043c\u0435\u0440\u043a\u0438 \u043a\u043e\u0438 \u0441\u0435 \u0432\u043e \u0440\u0430\u0437\u0432\u043e\u0458 \u0441\u043e \u043d\u0430\u0458\u0432\u0438\u0441\u043e\u043a\u0438 \u0440\u0435\u0437\u0443\u043b\u0442\u0430\u0442\u0438<\/li>\n
        • \u041f\u043e\u043c\u043e\u0433\u043d\u0435\u0442\u0435 \u0434\u0430 \u0437\u0430\u043f\u043e\u0447\u043d\u0435\u0442\u0435 \u0438 \u0434\u0430 \u0433\u043e \u0437\u0430\u0431\u0440\u0437\u0430\u0442\u0435 \u043d\u0430\u043f\u0440\u0435\u0434\u043e\u043a\u043e\u0442 \u043a\u043e\u043d \u043d\u043e\u0432\u0438 \u043f\u043e\u0442\u0432\u0440\u0434\u0435\u043d\u0438 \u043c\u0435\u0440\u043a\u0438 \u0437\u0430 \u043d\u0430\u0458\u0442\u0435\u0448\u043a\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438\u0442\u0435 \u0441\u043e \u043a\u043e\u043c\u0431\u0438\u043d\u0438\u0440\u0430\u045a\u0435 \u043d\u0430 \u0435\u043a\u0441\u043f\u0435\u0440\u0442\u0438\u0437\u0430\u0442\u0430, \u0444\u043e\u043a\u0443\u0441\u043e\u0442 \u0438 \u043f\u043e\u0441\u0432\u0435\u0442\u0435\u043d\u043e\u0441\u0442\u0430 \u043d\u0430 \u0448\u0438\u0440\u043e\u043a\u0438\u043e\u0442 \u043e\u043f\u0441\u0435\u0433 \u043d\u0430 \u0437\u0430\u0441\u0435\u0433\u043d\u0430\u0442\u0438 \u0441\u0442\u0440\u0430\u043d\u0438.<\/li>\n<\/ul>\n

          \u041d\u0438\u0435 \u043f\u0440\u0435\u0434\u043b\u0430\u0433\u0430\u043c\u0435 \u043a\u043e\u0440\u043f\u043e\u0440\u0430\u0442\u0438\u0432\u043d\u0438\u0442\u0435 \u043f\u0430\u0440\u0442\u043d\u0435\u0440\u0438, \u0437\u0430\u0435\u0434\u043d\u043e, \u0434\u0430 \u043e\u0431\u0435\u0437\u0431\u0435\u0434\u0430\u0442 $500.000-$750.000 \u0432\u043e \u0441\u0435\u043c\u0435\u043d\u043e\u0442\u043e \u0444\u0438\u043d\u0430\u043d\u0441\u0438\u0440\u0430\u045a\u0435 <\/b>\u0434\u043e \u0444\u043e\u0440\u043c\u0430\u043b\u0438\u0437\u0438\u0440\u0430 \u043e\u043f\u0435\u0440\u0430\u0442\u0438\u0432\u043d\u0430 \u043e\u0440\u0433\u0430\u043d\u0438\u0437\u0430\u0446\u0438\u0458\u0430 \u0437\u0430 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430 <\/b>\u043a\u043e\u0438 \u045c\u0435 \u043d\u0430\u0441\u043e\u0447\u0443\u0432\u0430\u0430\u0442, \u0443\u043f\u0440\u0430\u0432\u0443\u0432\u0430\u0430\u0442, \u0441\u0435 \u0437\u0430\u043b\u0430\u0433\u0430\u0430\u0442 \u0438 \u0440\u0430\u0437\u0432\u0438\u0432\u0430\u0430\u0442 \u0446\u0435\u043b\u043e\u0441\u043d\u0438 \u043f\u0440\u0435\u0434\u043b\u043e\u0437\u0438 \u0437\u0430 \u0438\u0441\u0442\u0440\u0430\u0436\u0443\u0432\u0430\u045a\u0435 \u0438 \u0431\u0443\u045f\u0435\u0442\u0438 \u0437\u0430 \u043f\u0440\u043e\u0435\u043a\u0442\u0438 \u043e\u0434 \u0424\u0430\u0437\u0430 II.\u00a0<\/p>\n

          \u041f\u0440\u0438\u0434\u043e\u043d\u0435\u0441\u0438\u0442\u0435 \u043c\u043e\u0436\u0435 \u0434\u0430 \u0441\u0435 \u043f\u0440\u0438\u043b\u0430\u0433\u043e\u0434\u0430\u0442 \u043d\u0430 \u0433\u043e\u043b\u0435\u043c\u0438\u043d\u0430\u0442\u0430 \u043d\u0430 \u043f\u0440\u0438\u043c\u0435\u043d\u043b\u0438\u0432\u0438\u0442\u0435 \u043a\u043e\u043c\u0435\u0440\u0446\u0438\u0458\u0430\u043b\u043d\u0438 \u0438\u043d\u0442\u0435\u0440\u0435\u0441\u0438 \u0438 \u0444\u0430\u0437\u0430\u0442\u0430 \u043d\u0430 \u0440\u0430\u0437\u0432\u043e\u0458 (\u043d\u0430 \u043f\u0440. \u0441\u0438\u0442\u0435 \u0441\u043e\u0435\u0434\u0438\u043d\u0435\u043d\u0438\u0458\u0430 \u0441\u00e8 \u0443\u0448\u0442\u0435 \u0432\u043e \u043a\u043b\u0438\u043d\u0438\u0447\u043a\u0430 \u0444\u0430\u0437\u0430 \u043d\u0430\u0441\u043f\u0440\u043e\u0442\u0438 \u043e\u043d\u0438\u0435 \u0441\u043e \u043f\u043e\u0441\u0442\u043e\u0435\u0447\u043a\u0438 \u0442\u0435\u043a\u043e\u0432\u0438 \u043d\u0430 \u043f\u0440\u0438\u0445\u043e\u0434\u0438).<\/p>\n

          \u0418\u043d\u0434\u0438\u0432\u0438\u0434\u0443\u0430\u043b\u043d\u0438\u0442\u0435 \u043f\u0440\u0438\u0434\u043e\u043d\u0435\u0441\u0438 \u0432\u043e \u0438\u043d\u0434\u0443\u0441\u0442\u0440\u0438\u0458\u0430\u0442\u0430 \u043c\u043e\u0436\u0435 \u0434\u0430 \u0441\u0435 \u0434\u0432\u0438\u0436\u0430\u0442 \u043e\u0434 \u043c\u0438\u043d\u0438\u043c\u0443\u043c $75.000 \u0437\u0430 \u043c\u0430\u043b\u0438 \u043a\u043e\u043c\u043f\u0430\u043d\u0438\u0438 \u043a\u043e\u0438 \u0441\u00e8 \u0443\u0448\u0442\u0435 \u0441\u0435 \u0432\u043e \u043a\u043b\u0438\u043d\u0438\u0447\u043a\u0430 \u0444\u0430\u0437\u0430 \u0434\u043e $250.000 \u0437\u0430 \u043f\u043e\u0433\u043e\u043b\u0435\u043c\u0438\u0442\u0435 \u043a\u043e\u0440\u043f\u043e\u0440\u0430\u0446\u0438\u0438 \u0441\u043e \u043f\u043e\u0433\u043e\u043b\u0435\u043c \u0433\u0430\u0441\u043e\u0432\u043e\u0434 \u0438 \u043f\u043e\u0441\u0442\u043e\u0435\u0447\u043a\u0438 \u043f\u0440\u0438\u043b\u0438\u0432 \u043d\u0430 \u043f\u0440\u0438\u0445\u043e\u0434\u0438.<\/p>\n

          \u041f\u043e\u0434\u0434\u0440\u0448\u043a\u0430\u0442\u0430\/\u043f\u0430\u0440\u0442\u043d\u0435\u0440\u0441\u0442\u0432\u043e\u0442\u043e \u0441\u043e 10 \u043a\u043e\u043c\u043f\u0430\u043d\u0438\u0438 \u045c\u0435 \u043e\u0431\u0435\u0437\u0431\u0435\u0434\u0438 \u0441\u0443\u0448\u0442\u0438\u043d\u0441\u043a\u0438 \u0433\u043b\u0430\u0441 \u0432\u043e \u0438\u043d\u0434\u0443\u0441\u0442\u0440\u0438\u0458\u0430\u0442\u0430, \u043a\u0430\u043a\u043e \u0438 \u0441\u0443\u0448\u0442\u0438\u043d\u0441\u043a\u0430 \u043e\u0441\u043d\u043e\u0432\u0430 \u0437\u0430 \u0434\u0432\u0438\u0436\u0435\u045a\u0435 \u043d\u0430\u043f\u0440\u0435\u0434 \u043d\u0430 \u0441\u0438\u0442\u0435 \u043a\u043b\u0443\u0447\u043d\u0438 \u0435\u043b\u0435\u043c\u0435\u043d\u0442\u0438 \u043d\u0430\u0432\u0435\u0434\u0435\u043d\u0438 \u043f\u043e\u0433\u043e\u0440\u0435.<\/p>\n

          \u041f\u0410\u0420\u0422\u041d\u0415\u0420\u0418 \u0418\u0421\u0422\u0420\u0410\u0416\u0423\u0412\u0410\u0427\u041a\u0418:<\/b><\/h3>\n

          \u0423\u0447\u0435\u0441\u0442\u0432\u043e\u0442\u043e \u043d\u0430 \u0438\u0441\u0442\u0440\u0430\u0436\u0443\u0432\u0430\u0447\u0438\u0442\u0435 \u043a\u043e\u0438 \u0440\u0430\u0431\u043e\u0442\u0430\u0442 \u043d\u0430 \u043d\u043e\u0432\u0438 \u0438 \u043f\u043e\u0434\u043e\u0431\u0440\u0435\u043d\u0438 \u0430\u043b\u0430\u0442\u043a\u0438 \u043a\u043e\u0438 \u0441\u043f\u043e\u0434\u0435\u043b\u0443\u0432\u0430\u0430\u0442 \u043f\u043e\u0441\u0432\u0435\u0442\u0435\u043d\u043e\u0441\u0442 \u0437\u0430 \u043f\u043e\u0434\u043e\u0431\u0440\u0443\u0432\u0430\u045a\u0435 \u043d\u0430 \u0441\u043e\u043e\u0434\u0432\u0435\u0442\u043d\u043e\u0441\u0442\u0430 \u0437\u0430 \u0441\u0435\u0440\u0438\u043e\u0437\u043d\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438\u0442\u0435 \u043f\u043e\u043f\u0443\u043b\u0430\u0446\u0438\u0438 \u0435 \u0446\u0435\u043d\u0442\u0440\u0430\u043b\u043d\u043e \u0437\u0430 \u0443\u0441\u043f\u0435\u0445\u043e\u0442 \u043d\u0430 \u041a\u043e\u043b\u0430\u0431\u043e\u0440\u0430\u0442\u0438\u0432\u043d\u0438\u043e\u0442 \u043d\u0430\u043f\u043e\u0440<\/b>. \u0420\u0430\u0437\u043c\u0438\u0441\u043b\u0435\u0442\u0435 \u0437\u0430 \u043d\u0438\u0437\u0430 \u043f\u0440\u0438\u0434\u043e\u0431\u0438\u0432\u043a\u0438 \u043e\u0434 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430\u0442\u0430 \u0441\u043e \u0434\u0440\u0443\u0433\u0438\u0442\u0435 \u0432\u043e \u0432\u0430\u0448\u0438\u0442\u0435 \u0442\u0435\u043a\u043e\u0432\u043d\u0438 \u0438 \u043f\u043b\u0430\u043d\u0438\u0440\u0430\u043d\u0438 \u043d\u0430\u043f\u043e\u0440\u0438 \u0437\u0430 \u0438\u0441\u0442\u0440\u0430\u0436\u0443\u0432\u0430\u045a\u0435 \u0438 \u0440\u0430\u0437\u0432\u043e\u0458:<\/p>\n

            \n
          • \u041a\u043e\u043b\u0435\u0433\u0438\u0458\u0430\u043b\u0435\u043d \u0444\u043e\u0440\u0443\u043c \u0437\u0430 \u043a\u043e\u043e\u0440\u0434\u0438\u043d\u0430\u0446\u0438\u0458\u0430 \u0438 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430; \u0440\u0430\u0437\u0432\u0438\u0458\u0442\u0435 \u0442\u0438\u043c\u0441\u043a\u043e-\u043d\u0430\u0443\u0447\u043d\u043e \u043e\u043f\u043a\u0440\u0443\u0436\u0443\u0432\u0430\u045a\u0435 \u0437\u0430 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u043a\u0430 \u0437\u0430 \u0434\u0430 \u0433\u043e \u043c\u0430\u043a\u0441\u0438\u043c\u0438\u0437\u0438\u0440\u0430\u0442\u0435 \u0432\u043b\u0438\u0458\u0430\u043d\u0438\u0435\u0442\u043e \u043d\u0430 \u0438\u043d\u0434\u0438\u0432\u0438\u0434\u0443\u0430\u043b\u043d\u0438\u0442\u0435 \u043f\u0440\u043e\u0433\u0440\u0430\u043c\u0438<\/li>\n
          • Expand your impact by participating in a collaborative approach with a “rising tide” effect<\/li>\n
          • \u0421\u0442\u0430\u043d\u0435\u0442\u0435 \u043f\u043e\u0434\u043e\u0431\u043d\u0438 \u0437\u0430 \u043e\u0446\u0435\u043d\u0443\u0432\u0430\u045a\u0435 \u043a\u0430\u043a\u043e \u043f\u0440\u043e\u0435\u043a\u0442 \u0441\u043e \u0432\u0438\u0441\u043e\u043a \u043f\u0440\u0438\u043e\u0440\u0438\u0442\u0435\u0442 \u043a\u0430\u0434\u0435 \u043f\u0430\u0440\u0442\u043d\u0435\u0440\u0438\u0442\u0435 \u043d\u0430 \u043a\u043e\u043d\u0437\u043e\u0440\u0446\u0438\u0443\u043c\u043e\u0442 \u045c\u0435 \u0441\u043e\u0440\u0430\u0431\u043e\u0442\u0443\u0432\u0430\u0430\u0442 \u0437\u0430 \u0434\u0430 \u043e\u0431\u0435\u0437\u0431\u0435\u0434\u0430\u0442 \u0444\u0438\u043d\u0430\u043d\u0441\u0438\u0440\u0430\u045a\u0435 \u0437\u0430 \u0438\u043c\u043f\u043b\u0435\u043c\u0435\u043d\u0442\u0430\u0446\u0438\u0458\u0430 \u043d\u0430 \u0438\u0437\u0431\u0440\u0430\u043d\u0438 \u043f\u0440\u043e\u0435\u043a\u0442\u0438<\/li>\n<\/ul>\n

             <\/p>\n

            \u041f\u0410\u0420\u0422\u041d\u0415\u0420\u0418 \u0417\u0410 \u041f\u0410\u0426\u0418\u0415\u041d\u0422\u0418:<\/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>\u041f\u0440\u0438\u0434\u043e\u0431\u0438\u0432\u043a\u0438\u0442\u0435 \u043e\u0434 \u0442\u043e\u0430 \u0434\u0430 \u0441\u0435 \u0431\u0438\u0434\u0435 \u043e\u0441\u043d\u043e\u0432\u0430\u0447 \u043c\u043e\u0436\u0435 \u0434\u0430 \u0432\u043a\u043b\u0443\u0447\u0443\u0432\u0430\u0430\u0442:<\/p>\n

              \n
            • Maximize efficiencies – diverse stakeholders working concurrently to advance identified and other promising new tools\u00a0<\/li>\n
            • \u0417\u0434\u0440\u0443\u0436\u0435\u0442\u0435 \u0433\u0438 \u043d\u0430\u043f\u043e\u0440\u0438\u0442\u0435 \u0437\u0430 \u043a\u043e\u043e\u0440\u0434\u0438\u043d\u0438\u0440\u0430\u045a\u0435, \u043f\u0440\u043e\u0448\u0438\u0440\u0443\u0432\u0430\u045a\u0435 \u0438 \u043f\u0440\u0438\u043b\u0430\u0433\u043e\u0434\u0443\u0432\u0430\u045a\u0435 \u043d\u0430 \u043d\u0430\u043f\u043e\u0440\u0438\u0442\u0435 \u0437\u0430 \u0440\u0430\u0437\u0432\u043e\u0458 \u0441\u043f\u0435\u0446\u0438\u0444\u0438\u0447\u043d\u0438 \u0437\u0430 \u0431\u043e\u043b\u0435\u0441\u0442\u0430<\/li>\n
            • \u0421\u043e\u0440\u0430\u0431\u043e\u0442\u0443\u0432\u0430\u0458\u0442\u0435 \u0437\u0430 \u0434\u0430 \u0441\u0435 \u0437\u0430\u0431\u0440\u0437\u0430\u0430\u0442 \u043d\u043e\u0432\u0438\u0442\u0435 \u043c\u0435\u0440\u043a\u0438 \u0437\u0430 \u043f\u0440\u043e\u043c\u043e\u0432\u0438\u0440\u0430\u045a\u0435 \u043d\u0430 \u0432\u043a\u043b\u0443\u0447\u0443\u0432\u0430\u045a\u0435 \u0432\u043e \u043f\u0440\u0435\u0442\u0441\u0442\u043e\u0458\u043d\u0438\u0442\u0435 \u043a\u043b\u0438\u043d\u0438\u0447\u043a\u0438 \u0438\u0441\u043f\u0438\u0442\u0443\u0432\u0430\u045a\u0430<\/li>\n<\/ul>\n\t\t\t\t\"inbound5559723848296493575\"\n\t\t\t\t\"DEEP\n\t

              \u0417\u0430\u0435\u0434\u043d\u0438\u0447\u043a\u0438\u0442\u0435 \u043d\u0430\u043f\u043e\u0440\u0438 \u045c\u0435 \u0433\u043e \u043f\u043e\u0437\u0434\u0440\u0430\u0432\u0430\u0442 \u0430\u043d\u0433\u0430\u0436\u043c\u0430\u043d\u043e\u0442 \u043d\u0430 \u0441\u0438\u0442\u0435 \u043f\u0430\u0440\u0442\u043d\u0435\u0440\u0438 \u043a\u043e\u0438 \u0458\u0430 \u0441\u043f\u043e\u0434\u0435\u043b\u0443\u0432\u0430\u0430\u0442 \u043f\u043e\u0441\u0432\u0435\u0442\u0435\u043d\u043e\u0441\u0442\u0430 \u0437\u0430 \u0437\u0430\u0431\u0440\u0437\u0443\u0432\u0430\u045a\u0435 \u043d\u0430 \u0442\u0435\u0441\u0442\u0438\u0440\u0430\u045a\u0435\u0442\u043e \u0438 \u043f\u043e\u0442\u0432\u0440\u0434\u0443\u0432\u0430\u045a\u0435\u0442\u043e \u043d\u0430 \u043d\u043e\u0432\u0438\u0442\u0435 \u043c\u0435\u0440\u043a\u0438 \u0437\u0430 \u0438\u0441\u0445\u043e\u0434\u043e\u0442 \u0437\u0430 \u043e\u043d\u0438\u0435 \u043a\u043e\u0438 \u0441\u0435 \u043d\u0430\u0458\u0442\u0435\u0448\u043a\u043e \u043f\u043e\u0433\u043e\u0434\u0435\u043d\u0438 \u043e\u0434 \u0441\u043b\u043e\u0436\u0435\u043d\u0438 \u0431\u043e\u043b\u0435\u0441\u0442\u0438. <\/b>\u0414\u043e\u0431\u0440\u0435\u0434\u043e\u0458\u0434\u0435\u043d\u0438 \u0441\u0435 \u0448\u0438\u0440\u043e\u043a\u0438 \u043e\u0440\u0433\u0430\u043d\u0438\u0437\u0430\u0446\u0438\u0438 \u0437\u0430 \u0437\u0430\u0441\u0442\u0430\u043f\u0443\u0432\u0430\u045a\u0435, \u043e\u0440\u0433\u0430\u043d\u0438\u0437\u0430\u0446\u0438\u0438 \u0437\u0430 \u043f\u0440\u0430\u0432\u0430\u0442\u0430 \u043d\u0430 \u043f\u0430\u0446\u0438\u0435\u043d\u0442\u0438\/\u0438\u043d\u0432\u0430\u043b\u0438\u0434\u0438\u0437\u0438\u0440\u0430\u043d\u0438, \u043f\u0440\u043e\u0444\u0435\u0441\u0438\u043e\u043d\u0430\u043b\u043d\u0438 \u0437\u0434\u0440\u0443\u0436\u0435\u043d\u0438\u0458\u0430, \u043a\u043b\u0443\u0447\u043d\u0438 \u0432\u043b\u0430\u0434\u0438\u043d\u0438 \u043e\u0440\u0433\u0430\u043d\u0438\u0437\u0430\u0446\u0438\u0438 \u0438 \u0434\u0440\u0443\u0433\u0438.<\/p>\n\n

              \u041d\u0438\u0435 \u0441\u043c\u0435 \u0434\u043b\u0430\u0431\u043e\u043a\u043e \u0431\u043b\u0430\u0433\u043e\u0434\u0430\u0440\u043d\u0438 \u043d\u0430 \u043d\u0430\u0448\u0438\u0442\u0435 \u0441\u043f\u043e\u043d\u0437\u043e\u0440\u0438 \u043e\u0434 \u0424\u0430\u0437\u0430 I \u0448\u0442\u043e \u0434\u043e\u0437\u0432\u043e\u043b\u0438\u0458\u0430 \u0434\u0430 \u0437\u0430\u043f\u043e\u0447\u043d\u0435 \u043e\u0432\u0430\u0430 \u043a\u0440\u0438\u0442\u0438\u0447\u043d\u0430 \u0440\u0430\u0431\u043e\u0442\u0430.<\/b><\/h2>\n

               <\/p>\n

              \n\t\t\u041f\u043e\u0434\u0434\u0440\u0448\u043a\u0430 \u043d\u0430 \u0434\u043e\u043d\u0430\u0442\u043e\u0440\u0438\n\t<\/h2>\n\t\t\t\t\"praxis\n

              \n\t\t\u041f\u043e\u043a\u0440\u043e\u0432\u0438\u0442\u0435\u043b\u0438\/\u041f\u0430\u0440\u0442\u043d\u0435\u0440\u0438 \u0434\u043e\u043d\u0430\u0442\u043e\u0440\u0438\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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