{"id":4493,"date":"2025-09-29T09:39:10","date_gmt":"2025-09-29T09:39:10","guid":{"rendered":"https:\/\/benzifoundation.org\/fair-training-school-2025-promuovere-pratiche-fair-sui-dati-per-la-ricerca-sulle-malattie-rare\/"},"modified":"2025-09-29T09:39:10","modified_gmt":"2025-09-29T09:39:10","slug":"fair-training-school-2025-promuovere-pratiche-fair-sui-dati-per-la-ricerca-sulle-malattie-rare","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/fair-training-school-2025-promuovere-pratiche-fair-sui-dati-per-la-ricerca-sulle-malattie-rare\/","title":{"rendered":"FAIR Training School 2025 \u2013 Promuovere pratiche FAIR sui dati per la ricerca sulle malattie rare"},"content":{"rendered":"<p>Nell\u2019ambito della <strong>FAIR Training School 2025 \u2013 Advancing FAIR data practices for rare disease research<\/strong>, organizzata da <a href=\"\/?p=17926\"><strong>ERDERA <\/strong><\/a>e ospitata dalla <a href=\"https:\/\/www.worldduchenne.org\/\"><strong>World Duchenne Organization<\/strong><\/a>, la nostra ricercatrice <strong>Annalisa Landi <\/strong>ha tenuto una sessione su \u201c<em>Protezione dei dati, etica e aspetti regolatori<\/em>\u201d.<\/p>\n<p>Il suo intervento si \u00e8 concentrato sugli aspetti chiave della protezione dei dati personali, dell\u2019etica e degli aspetti regolatori nella ricerca sulle malattie rare, dove i dati sono spesso scarsi, frammentati e complessi a causa del basso numero di pazienti.<\/p>\n<h4>Dati sanitari e ricerca sulle malattie rare<\/h4>\n<p>Annalisa ha sottolineato come i dati sanitari rappresentino una risorsa fondamentale per la ricerca, in particolare nell\u2019ambito delle malattie rare. L\u2019accesso, la condivisione e l\u2019interoperabilit\u00e0 dei dati possono infatti favorire diagnosi pi\u00f9 rapide, studi innovativi e nuove opportunit\u00e0 terapeutiche.<br \/>Allo stesso tempo, l\u2019uso di questi dati comporta sfide importanti: rischi di re-identificazione, tutela delle popolazioni vulnerabili e gestione dei dati genetici. <\/p>\n<h4>Protezione dei dati ed etica della ricerca<\/h4>\n<p>La presentazione ha offerto una panoramica delle considerazioni sulla protezione dei dati, con particolare attenzione al quadro europeo e ai principi fondamentali del <strong>Regolamento Generale sulla Protezione dei Dati (GDPR)<\/strong> e ai diritti degli interessati.<br \/>Sono stati affrontati anche gli aspetti etici, tra cui il consenso informato, il rispetto dei diritti umani e la necessit\u00e0 delle approvazioni da parte dei comitati etici per garantire trasparenza. <\/p>\n<h4>Il quadro normativo europeo<\/h4>\n<p>Sono stati approfonditi anche gli aspetti regolatori legati ai dati sanitari, con riferimento al Regolamento sullo <strong><a href=\"\/?p=16394\">Spazio Europeo dei Dati Sanitari (EHDS)<\/a><\/strong>, che mira a promuovere una gestione responsabile dei dati sanitari e lo sviluppo di ecosistemi di ricerca sostenibili in tutta Europa.<\/p>\n<h4>Messaggi chiave<\/h4>\n<p>Alcuni punti essenziali emersi dall\u2019intervento:<\/p>\n<ul>\n<li>verificare sempre le condizioni di accessibilit\u00e0 e le preferenze di consenso informato;<\/li>\n<li>adottare misure di protezione dati personalizzate per tutelare la privacy dei pazienti;<\/li>\n<li>rispettare i quadri etici, normativi e di protezione dei dati vigenti;<\/li>\n<li>predisporre accordi chiari di condivisione, accesso e utilizzo dei dati.<\/li>\n<\/ul>\n<p>Con il suo contributo, Annalisa Landi ha offerto una panoramica completa delle sfide e opportunit\u00e0 legate alla gestione etica e sicura dei dati sanitari a fini di ricerca, riaffermando l\u2019impegno della Fondazione Benzi nel promuovere pratiche di ricerca responsabili in linea con i principi FAIR.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Nell\u2019ambito della FAIR Training School 2025 \u2013 Advancing FAIR data practices for rare disease research, organizzata da ERDERA e ospitata dalla World Duchenne Organization, la nostra ricercatrice Annalisa Landi ha tenuto una sessione su \u201cProtezione dei dati, etica e aspetti regolatori\u201d. Il suo intervento si \u00e8 concentrato sugli aspetti chiave della protezione dei dati personali, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4492,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[224,197,213],"tags":[],"class_list":["post-4493","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aggiornamenti-dai-progetti","category-erdera","category-eventi"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FAIR Training School 2025 \u2013 Promuovere pratiche FAIR sui dati per la ricerca sulle malattie rare - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"FGB joins FAIR 2025: Annalisa Landi on ethics, GDPR and EU rules shaping responsible health data use in rare disease research\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/benzifoundation.org\/it\/fair-training-school-2025-promuovere-pratiche-fair-sui-dati-per-la-ricerca-sulle-malattie-rare\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FAIR Training School 2025 \u2013 Promuovere pratiche FAIR sui dati per la ricerca sulle malattie rare - 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