{"id":4311,"date":"2026-01-25T20:16:16","date_gmt":"2026-01-25T20:16:16","guid":{"rendered":"https:\/\/benzifoundation.org\/project\/better\/"},"modified":"2026-02-26T15:21:15","modified_gmt":"2026-02-26T15:21:15","slug":"better","status":"publish","type":"project","link":"https:\/\/benzifoundation.org\/it\/project\/better\/","title":{"rendered":"BETTER"},"content":{"rendered":"<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section\">\n<div class=\"et_pb_row_0 et_pb_row et_block_row\">\n<div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module et_pb_text_align_center\"><div class=\"et_pb_text_inner\"><p>BETTER<\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_section_1 et_pb_section et_section_regular et_block_section\">\n<div class=\"et_pb_row_1 et_pb_row et_pb_row_3-4_1-4 et_pb_gutters2 et_block_row et_block_row_3-4_1-4\">\n<div class=\"et_pb_column_1 et_pb_column et_pb_column_3_4 et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_text_1 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module strongViola\"><div class=\"et_pb_text_inner\"><p>Il progetto mira <strong>a migliorare la ricerca scientifica, in particolare per le malattie rare, integrando campioni biologici e dati sanitari strutturati provenienti da biobanche, registri di malattie e cartelle cliniche<\/strong>. Gli obiettivi principali sono:<br \/>1. creare un sistema di dati sanitari FAIR (Findable, Accessible, Interoperable e Reusable) per l'uso secondario dei dati a fini normativi.<br \/>2. raccogliere ed elaborare campioni biologici nel rispetto delle normative per migliorare le strategie terapeutiche.<br \/>3. sviluppare uno strumento digitale per il consenso informato dinamico, incoraggiando la partecipazione dei pazienti alla ricerca.<br \/>L'approccio olistico del progetto mira a migliorare la diagnosi, i trattamenti, la sicurezza dei pazienti e a ridurre i costi sanitari. <\/p>\n<p><strong>RUOLO DELLA FONDAZIONE<\/strong><\/p>\n<p>La Fondazione mette a disposizione del progetto la sua esperienza in campo etico e normativo, soprattutto nel campo della ricerca sulle malattie rare.<br \/>In particolare, nel progetto la Fondazione coordina le attivit\u00e0 etiche e normative relative al trattamento dei dati personali e alla manipolazione dei biocampioni e al loro utilizzo conforme alle normative per la ricerca. Per tutta la durata del progetto, FGB garantisce la conformit\u00e0 delle attivit\u00e0 di ricerca alle disposizioni in materia. I partner saranno informati sulla necessit\u00e0 di ottenere l'approvazione etica per la raccolta di dati personali e sanitari, su qualsiasi potenziale problema etico e normativo che potrebbe sorgere e su come risolverlo.   <\/p>\n<p><strong>FINANZIATO DA<\/strong>: PNRR-MR1-2023-12377715. Missione 6\/componente 2\/Investimento: 2.1 \u201cRafforzamento e potenziamento della ricerca biomedica del SSN\u201d, finanziato dall\u2019Unione Europea \u2013 NextGeneration  <\/p>\n<\/div><\/div>\n\n<div class=\"et_pb_image_0 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/loghi.png\" width=\"851\" height=\"315\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/loghi.png 851w, https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/loghi-480x178.png 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 851px, 100vw\" class=\"wp-image-3847\" title=\"loghi\" \/><\/span><\/div>\n\n<div class=\"et_pb_text_2 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module strongViola\"><div class=\"et_pb_text_inner\"><p><strong>DURATA:<\/strong> Ago 2024 - Ago 2026<\/p>\n<hr>\n<p><strong>PARTNERS:<\/strong><\/p>\n<ul>\n<li><a href=\"https:\/\/www.ior.it\/en\" target=\"_blank\" rel=\"noopener\">IRCCS Rizzoli Orthopaedic Institute<\/a><\/li>\n<li><a href=\"https:\/\/www.ospedaliriunitipalermo.it\/\">Azienda Ospedaliera Ospedali Riuniti Villa Sofia Cervello<\/a><\/li>\n<li><a href=\"https:\/\/www.agenas.gov.it\/\">Agenzia nazionale per i servizi sanitari regionali (Agenas)<\/a><\/li>\n<\/ul>\n<\/div><\/div>\n<\/div>\n\n<div class=\"et_pb_column_2 et_pb_column et_pb_column_1_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_image_1 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/BETTER-removebg-preview.png\" width=\"220\" height=\"220\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/BETTER-removebg-preview.png 220w, https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/BETTER-removebg-preview-150x150.png 150w\" sizes=\"(max-width: 220px) 100vw, 220px\" class=\"wp-image-3848\" title=\"BETTER-logo\" \/><\/span><\/div>\n\n<div class=\"et_pb_text_3 et_pb_text et_pb_bg_layout_light et_clickable et_pb_module et_block_module et_pb_text_align_center\"><div class=\"et_pb_text_inner\"><p><a href=\"https:\/\/www.ior.it\/en\/ricerca-e-innovazione\/progetti-di-ricerca\/BETTER\" target=\"_blank\" rel=\"noopener\">www.ior.it<\/a><\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_section_2 et_pb_section et_section_regular et_block_section\">\n<div class=\"et_pb_row_2 et_pb_row et_block_row\">\n<div class=\"et_pb_column_3 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\">\n<div class=\"et_pb_text_4 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module titViola1\"><div class=\"et_pb_text_inner\"><h3>Guarda tutti gli aggiornamenti del progetto<\/h3>\n<\/div><\/div>\n\n<div class=\"et_pb_group_carousel_0 et_pb_group_carousel et_pb_group et_pb_module et_pb_group_carousel_arrows_outside et_pb_group_carousel_dots_center et_pb_group_carousel_dots_below et_pb_group_carousel_slides_3\"><div class=\"et_pb_group_carousel_container\"><div class=\"et_pb_group_carousel_track\"><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_0 et_pb_group et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"0\">\n<div class=\"et_pb_image_2 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/conferenza-sif-sulla-salute-pediatrica-e-le-malattie-rare\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/03\/Torretta-Dalessandro-Sblano-400x250.png\" title=\"Torretta - Dalessandro - Sblano\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/03\/Torretta-Dalessandro-Sblano-400x250.png 400w\" class=\"wp-image-4815\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_0 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">Conferenza SIF sulla salute pediatrica e le malattie rare<\/h1><\/div><\/div>\n<\/div><\/div><div class=\"et_pb_group_carousel_slide\"><div class=\"et_pb_group_1 et_pb_group et-last-child et_pb_module et_flex_group et_pb_css_mix_blend_mode_passthrough\" data-loop-item=\"1\">\n<div class=\"et_pb_image_3 et_pb_image et_pb_module et_flex_module\"><a href=\"https:\/\/benzifoundation.org\/it\/nuovo-progetto-per-la-gestione-e-linteroperabilita-dei-dati-nelle-biobanche\/\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/biobanks-400x250.jpg\" title=\"biobanks\" width=\"400\" height=\"250\" srcset=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/biobanks-400x250.jpg 400w\" class=\"wp-image-1683\" \/><\/span><\/a><\/div>\n\n<div class=\"et_pb_heading_1 et_pb_heading et_pb_module et_flex_module\"><div class=\"et_pb_heading_container\"><h1 class=\"et_pb_module_header\">Nuovo progetto per la gestione e l\u2019interoperabilit\u00e0 dei dati nelle biobanche<\/h1><\/div><\/div>\n<\/div><\/div><\/div><\/div><span class=\"et_pb_group_carousel_arrow et_pb_group_carousel_arrow_prev\" role=\"button\" tabindex=\"0\" aria-label=\"Previous slide\"><span class=\"et-pb-icon\">4<\/span><\/span><span class=\"et_pb_group_carousel_arrow et_pb_group_carousel_arrow_next\" role=\"button\" tabindex=\"0\" aria-label=\"Next slide\"><span class=\"et-pb-icon\">5<\/span><\/span><div class=\"et_pb_group_carousel_dots\"><\/div><\/div>\n<\/div>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4310,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"project_category":[218],"project_tag":[],"class_list":["post-4311","project","type-project","status-publish","has-post-thumbnail","hentry","project_category-in-corso"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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