{"id":12212,"date":"2025-02-03T19:11:59","date_gmt":"2025-02-03T19:11:59","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?p=12212"},"modified":"2025-02-03T20:16:29","modified_gmt":"2025-02-03T20:16:29","slug":"vns_study","status":"publish","type":"post","link":"https:\/\/ring20researchsupport.co.uk\/it\/2025\/02\/vns_study\/","title":{"rendered":"Studio VNS"},"content":{"rendered":"
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Hai un impianto VNS o ne hai avuto uno in passato?<\/strong>
In tal caso, potresti contribuire alla ricerca per stabilire se la VNS sia una terapia efficace per le persone affette dalla sindrome r(20).
Il dott. Ken Myers, neurologo pediatrico, clinico-scienziato e professore associato presso il Montreal Children's Hospital, Canada, \u00e8 un membro eminente del nostro Comitato scientifico consultivo internazionale Ring20\u00a0<\/a>Insieme all'aiuto di uno studente di medicina, il dott. Myers sta raccogliendo una serie di casi per illustrare l'esperienza dei pazienti nell'uso di VNS in persone con r(20), che non \u00e8 stata ancora trattata nella letteratura medica. I risultati potrebbero aiutare a informare i team medici nel loro processo decisionale se offrire o meno la terapia VNS a persone con una diagnosi di sindrome r(20) in futuro.<\/p>

Continua a leggere per saperne di pi\u00f9 su questo studio e su come puoi prendervi parte...<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t

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OBIETTIVO: Valutare l'efficacia della stimolazione del nervo vago (VNS) nei pazienti con epilessia r(20) e farmaco-resistente<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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Perch\u00e9 partecipare\u2026<\/h2>

Grazie alla comprensione delle esperienze reali relative all'uso di un VNS, i ricercatori possono provare a determinare se il VNS \u00e8 un'opzione di trattamento efficace per la sindrome r(20) e quando e per chi questa terapia dovrebbe essere presa in considerazione.<\/p>

Sono idoneo\u2026<\/h2>

Per poter partecipare a questo studio \u00e8 necessario:<\/p>

  1. Avere una diagnosi confermata del cromosoma ad anello 20<\/li>
  2. Avere una diagnosi confermata di epilessia<\/li>
  3. Aver subito un impianto di stimolatore del nervo vago (non \u00e8 necessario che sia attivo al momento)<\/li>
  4. Essere in grado di fornire il proprio consenso; il consenso informato pu\u00f2 essere ottenuto dal paziente o dal caregiver.<\/li><\/ol>

    L'ideale sarebbe che tu parlassi inglese o francese, ma in caso contrario il team di ricerca cercher\u00e0 di trovare un modo per raccogliere i dati da te.<\/p>

    Questo mi sar\u00e0 utile\u2026<\/h2>

    I risultati potrebbero aiutare i team medici a orientare le loro decisioni.\u00a0
    I principali vantaggi sono aumentare la consapevolezza di quanto grande possa essere il problema dell'epilessia in r(20) e sottolineare la necessit\u00e0 di nuove terapie. Pi\u00f9 specificamente, se dimostriamo un tasso di successo ragionevolmente alto con VNS, si spera che ci\u00f2 incoraggi i medici a raccomandare questa terapia prima nel corso clinico dei pazienti r(20).<\/p>

    Cosa dovr\u00f2 fare\u2026<\/h2>

    Per prima cosa, ti verr\u00e0 chiesto di acconsentire al database di ricerca. Poi verr\u00e0 presa un'anamnesi medica completa. Ti verr\u00e0 chiesto di rispondere ad alcune domande durante una breve intervista telefonica o video della durata di circa 20 minuti e poi acconsentirai all'accesso del team di ricerca alla tua cartella clinica (inclusi i tuoi risultati genetici) tramite il tuo medico.
    Tutti i dati dovranno essere raccolti entro la fine di luglio 2025.<\/p>

    Cosa succeder\u00e0 dopo\u2026<\/h2>

    L'obiettivo del team di ricerca \u00e8 pubblicare un documento di ricerca sui risultati entro la fine del 2025 e presentarli al convegno annuale della Canadian League Against Epilepsy (la pi\u00f9 grande conferenza canadese sull'epilessia) e, auspicabilmente, a un convegno internazionale come quello dell'American Epilepsy Society.<\/p>

    Domande\u2026<\/h2>

    Per qualsiasi domanda, contattare direttamente il team di ricerca utilizzando l'indirizzo e-mail indicato di seguito.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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    Per richiedere di partecipare a questo studio o per ulteriori domande, contattare<\/p>

    Dottor Ken Myers: kenneth.myers@mcgill.ca<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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    Verr\u00e0 organizzato un webinar con il dott. Myers, in modo che tu possa saperne di pi\u00f9 sullo studio e porre domande.<\/p>

    I dettagli saranno pubblicati qui a breve...<\/p>

    Successivamente verr\u00e0 aggiunta una registrazione a questa pagina web.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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    <\/div>\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"

    Hai mai avuto un impianto VNS? Scopri come puoi contribuire alla ricerca per r(20)... che il VNS ti abbia aiutato o meno, la tua esperienza \u00e8 importante.<\/p>","protected":false},"author":3,"featured_media":11884,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[84,43],"tags":[],"class_list":["post-12212","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research"],"yoast_head":"\nVNS study - Ring20 Research and Support UK CIO<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ring20researchsupport.co.uk\/it\/2025\/02\/vns_study\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"VNS study - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"Have you ever had a VNS implant? 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