{"id":150,"date":"2025-04-28T17:51:29","date_gmt":"2025-04-28T17:51:29","guid":{"rendered":"https:\/\/honeydew-hyena-350809.hostingersite.com\/?page_id=150"},"modified":"2025-05-08T12:59:25","modified_gmt":"2025-05-08T12:59:25","slug":"research","status":"publish","type":"page","link":"https:\/\/kidswithspg3a.com\/it\/research\/","title":{"rendered":"Ricerca"},"content":{"rendered":"<!-- wp:spacer -->\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n<!-- \/wp:spacer -->\n\n<!-- wp:group {\"style\":{\"color\":{\"background\":\"#ffffff91\"}},\"layout\":{\"type\":\"constrained\"}} -->\n<div class=\"wp-block-group has-background\" style=\"background-color:#ffffff91\">\n  <!-- wp:heading {\"level\":1} -->\n  <h1 class=\"wp-block-heading\" id=\"research\">Ricerca<\/h1>\n  <!-- \/wp:heading -->\n\n  <!-- wp:ghostkit\/accordion {\"itemsCount\":4,\"collapseOne\":true,\"collapseTitleTag\":\"h2\"} -->\n  <div class=\"ghostkit-accordion ghostkit-accordion-4 ghostkit-accordion-collapse-one\">\n    <!-- wp:ghostkit\/accordion-item {\"titleTag\":\"h2\",\"slug\":\"accordion-the-carter-foundation-research-program\"} -->\n    <div class=\"ghostkit-accordion-item\" data-accordion=\"accordion-the-carter-foundation-research-program\">\n      <h2 class=\"ghostkit-accordion-item-heading\">\n        <button type=\"button\" id=\"accordion-the-carter-foundation-research-program-button\" aria-expanded=\"false\" aria-controls=\"accordion-the-carter-foundation-research-program-content\">\n          <span class=\"ghostkit-accordion-item-label\">Il Programma di Ricerca della Fondazione Carter<\/span>\n          <span class=\"ghostkit-accordion-item-collapse\">\n            <svg class=\"ghostkit-svg-icon\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n              <path d=\"M9.21967 6.2197C9.51256 5.9268 9.98744 5.9268 10.2803 6.2197L15.5303 11.4697C15.8232 11.7626 15.8232 12.2374 15.5303 12.5303L10.2803 17.7803C9.98744 18.0732 9.51256 18.0732 9.21967 17.7803C8.92678 17.4874 8.92678 17.0126 9.21967 16.7197L13.9393 12L9.21967 7.2803C8.92678 6.9874 8.92678 6.5126 9.21967 6.2197Z\" fill=\"currentColor\"><\/path>\n            <\/svg>\n          <\/span>\n        <\/button>\n      <\/h2>\n      <div id=\"accordion-the-carter-foundation-research-program-content\" class=\"ghostkit-accordion-item-content\" role=\"region\" aria-labelledby=\"accordion-the-carter-foundation-research-program-button\">\n        <!-- wp:embed {\"url\":\"https:\/\/www.youtube.com\/watch?v=LNd_Oog5fiU\",\"type\":\"video\",\"providerNameSlug\":\"youtube\",\"responsive\":true,\"className\":\"wp-embed-aspect-16-9 wp-has-aspect-ratio\"} -->\n        <figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\">\n          <div class=\"wp-block-embed__wrapper\">\n            <iframe loading=\"lazy\" title=\"Carter Foundation SPG3A Research Program Update - February 2025\" width=\"1290\" height=\"726\" src=\"https:\/\/www.youtube.com\/embed\/LNd_Oog5fiU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n          <\/div>\n        <\/figure>\n        <!-- \/wp:embed -->\n\n        <!-- wp:paragraph -->\n        <p>La missione della <strong>Fondazione Carter<\/strong> \u00e8 rendere possibile lo sviluppo di terapie e trattamenti per i bambini affetti da paraplegia spastica ereditaria (HSP). Attualmente si concentra sulle due forme pi\u00f9 comuni di HSP, SPG3A e SPG4, con particolare attenzione alle mutazioni a esordio precoce e spesso condizioni de novo.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>L\u2019obiettivo della Fondazione \u00e8 colmare il divario tra la comprensione cellulare e genetica di base di queste condizioni e lo sviluppo di terapie. Questo approccio \u00e8 chiamato medicina traslazionale. Ci\u00f2 significa prendere la comprensione scientifica di base attuale di queste condizioni e verificare ipotesi terapeutiche in modelli animali viventi. Con un modello animale riproducibile, le aziende biofarmaceutiche e gli istituti possono intraprendere lo sviluppo terapeutico formale e studi clinici.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>In questo video, i dottor Blackstone e Avellone discutono degli <strong>ultimi sviluppi del Programma di Ricerca della Fondazione Carter<\/strong>, che sta studiando le seguenti quattro ipotesi terapeutiche nel modello murino SPG3A sviluppato presso i Jackson Laboratories:<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>&#8211; Agenti di modulazione lipidica<br>&#8211; Inibizione della via di segnalazione delle proteine morfogenetiche ossee (BMP)<br>&#8211; Terapie con oligonucleotide antisenso (ASO)<br>&#8211; Editing genetico avanzato (editing delle basi)<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>Tempi previsti: 1-2 anni. Tuttavia, non appena vengono osservati risultati preliminari promettenti, il piano sar\u00e0 quello di avviare discussioni con le aziende biofarmaceutiche e gli istituti pertinenti in parallelo.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p><a href=\"https:\/\/www.massgeneral.org\/doctors\/21073\/craig-blackstone\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Dr. Craig Blackstone<\/strong><\/a> \u00e8 il capo della Divisione dei Disturbi del Movimento presso il Massachusetts General Hospital (MGH) e professore di neurologia presso la Harvard Medical School. Prima di arrivare al MGH nel 2020, il Dr. Blackstone ha trascorso 20 anni presso i National Institutes of Health, ricoprendo infine il ruolo di ricercatore senior e capo della sezione di biologia cellulare all\u2019interno del ramo di neurogenetica. Sotto la sua guida, il suo gruppo ha studiato i meccanismi cellulari e molecolari dei disturbi del movimento ereditari. \u00c8 uno dei principali ricercatori al mondo in questo campo.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p><a href=\"https:\/\/en.wikipedia.org\/wiki\/Joseph_Avellone)\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Dr. Joseph Avellone<\/strong><\/a>, chirurgo in pensione ed executive del settore sanitario, ha un nipote, Carter, affetto da SPG3A complesso de novo. Insieme ad altri membri della famiglia, ha fondato la <strong>Fondazione Carter per la Ricerca Neurologica<\/strong>.<\/p>\n        <!-- \/wp:paragraph -->\n      <\/div>\n    <\/div>\n    <!-- \/wp:ghostkit\/accordion-item -->\n\n    <!-- wp:ghostkit\/accordion-item {\"titleTag\":\"h2\",\"slug\":\"accordion-early-onset-hsp-natural-history-study\"} -->\n    <div class=\"ghostkit-accordion-item\" data-accordion=\"accordion-early-onset-hsp-natural-history-study\">\n      <h2 class=\"ghostkit-accordion-item-heading\">\n        <button type=\"button\" id=\"accordion-early-onset-hsp-natural-history-study-button\" aria-expanded=\"false\" aria-controls=\"accordion-early-onset-hsp-natural-history-study-content\">\n          <span class=\"ghostkit-accordion-item-label\">Studio sulla Storia Naturale dell\u2019HSP a Esordio Precoce<\/span>\n          <span class=\"ghostkit-accordion-item-collapse\">\n            <svg class=\"ghostkit-svg-icon\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n              <path d=\"M9.21967 6.2197C9.51256 5.9268 9.98744 5.9268 10.2803 6.2197L15.5303 11.4697C15.8232 11.7626 15.8232 12.2374 15.5303 12.5303L10.2803 17.7803C9.98744 18.0732 9.51256 18.0732 9.21967 17.7803C8.92678 17.4874 8.92678 17.0126 9.21967 16.7197L13.9393 12L9.21967 7.2803C8.92678 6.9874 8.92678 6.5126 9.21967 6.2197Z\" fill=\"currentColor\"><\/path>\n            <\/svg>\n          <\/span>\n        <\/button>\n      <\/h2>\n      <div id=\"accordion-early-onset-hsp-natural-history-study-content\" class=\"ghostkit-accordion-item-content\" role=\"region\" aria-labelledby=\"accordion-early-onset-hsp-natural-history-study-button\">\n        <!-- wp:paragraph -->\n        <p><a href=\"https:\/\/connects.catalyst.harvard.edu\/Profiles\/display\/Person\/125033\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Dr. Darius Ebrahimi-Fakhari<\/strong><\/a> del <a href=\"https:\/\/www.childrenshospital.org\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Boston Children\u2019s Hospital<\/strong><\/a> sta creando <a href=\"https:\/\/www.kidswithspg3a.com\/research#\"><strong>un registro di tutte le paraplegie spastiche ereditarie a esordio pediatrico<\/strong><\/a> (<a href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT04712812?cond=NCT47_12812&#038;draw=2&#038;rank=1\" target=\"_blank\" rel=\"noreferrer noopener\">Registro e Studio sulla Storia Naturale per la Paraplegia Spastica Ereditaria a Esordio Precoce<\/a>).<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>Gli studi sulla storia naturale sono fondamentali per le malattie rare. Senza di essi, le opzioni di trattamento non saranno disponibili. I futuri studi clinici relativi a cure per l\u2019HSP pediatrica, inclusi quelli che potrebbero derivare dal programma di ricerca della Fondazione Carter per la Ricerca Neurologica, probabilmente dipenderanno da questo registro.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p><strong>Lo studio \u00e8 ancora alla ricerca di partecipanti a livello globale.<\/strong> Ad agosto 2022, <a href=\"https:\/\/www.kidswithspg3a.com\/research#\"><strong>il registro contava solo 11 casi di SPG3A<\/strong>.<\/a><\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>Se hai SPG3A e non ti sei ancora registrato, ti consigliamo vivamente di contattare <br><a href=\"http:\/\/sahin-lab.org\/people\/catherine-jordan-ms\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>Amy Tam<\/strong><\/a>, la coordinatrice dello studio, tramite e-mail: <br><a href=\"http:\/\/Catherine.Jordan@childrens.harvard.edu\/\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>amy.tam@childrens.harvard.edu<\/strong><\/a><\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>La partecipazione \u00e8 GRATUITA e include una consulenza di un\u2019ora tramite Zoom con il Dr. Darius.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>Criteri di inclusione:<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:list -->\n        <ul class=\"wp-block-list\">\n          <!-- wp:list-item -->\n          <li>Esordio dei sintomi di paraplegia spastica ereditaria prima dei 18 anni<\/li>\n          <!-- \/wp:list-item -->\n\n          <!-- wp:list-item -->\n          <li>Et\u00e0 attuale inferiore a 30 anni<\/li>\n          <!-- \/wp:list-item -->\n\n          <!-- wp:list-item -->\n          <li>Presenza di varianti nei geni correlati all\u2019HSP e\/o un parente con tale diagnosi<\/li>\n          <!-- \/wp:list-item -->\n        <\/ul>\n        <!-- \/wp:list -->\n      <\/div>\n    <\/div>\n    <!-- \/wp:ghostkit\/accordion-item -->\n\n    <!-- wp:ghostkit\/accordion-item {\"titleTag\":\"h2\",\"slug\":\"accordion-takeaways-for-spg3a-from-de-novo-spg4-symposium-organized-by-nih\"} -->\n    <div class=\"ghostkit-accordion-item\" data-accordion=\"accordion-takeaways-for-spg3a-from-de-novo-spg4-symposium-organized-by-nih\">\n      <h2 class=\"ghostkit-accordion-item-heading\">\n        <button type=\"button\" id=\"accordion-takeaways-for-spg3a-from-de-novo-spg4-symposium-organized-by-nih-button\" aria-expanded=\"false\" aria-controls=\"accordion-takeaways-for-spg3a-from-de-novo-spg4-symposium-organized-by-nih-content\">\n          <span class=\"ghostkit-accordion-item-label\">Conclusioni per SPG3A dal Simposio su SPG4 De Novo Organizzato dai NIH<\/span>\n          <span class=\"ghostkit-accordion-item-collapse\">\n            <svg class=\"ghostkit-svg-icon\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n              <path d=\"M9.21967 6.2197C9.51256 5.9268 9.98744 5.9268 10.2803 6.2197L15.5303 11.4697C15.8232 11.7626 15.8232 12.2374 15.5303 12.5303L10.2803 17.7803C9.98744 18.0732 9.51256 18.0732 9.21967 17.7803C8.92678 17.4874 8.92678 17.0126 9.21967 16.7197L13.9393 12L9.21967 7.2803C8.92678 6.9874 8.92678 6.5126 9.21967 6.2197Z\" fill=\"currentColor\"><\/path>\n            <\/svg>\n          <\/span>\n        <\/button>\n      <\/h2>\n      <div id=\"accordion-takeaways-for-spg3a-from-de-novo-spg4-symposium-organized-by-nih-content\" class=\"ghostkit-accordion-item-content\" role=\"region\" aria-labelledby=\"accordion-takeaways-for-spg3a-from-de-novo-spg4-symposium-organized-by-nih-button\">\n        <!-- wp:paragraph -->\n        <p>Il Dr. Craig Blackstone del Massachusetts General Hospital di Boston \u00e8 uno dei principali ricercatori sull\u2019HSP, in particolare su SPG3A.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>In collaborazione con la Fondazione Carter per la Ricerca sulle Malattie Neurologiche, sta testando, sia su modelli in vitro che in vivo, vari composti farmacologici e metodi di terapia genica con l\u2019obiettivo di progettare studi clinici per bambini con SPG3A de novo nel prossimo futuro.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>Puoi guardare la presentazione della ricerca del Dr. Blackstone qui, a partire dal minuto 24:32: <a href=\"https:\/\/videocast.nih.gov\/watch=44694\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>https:\/\/videocast.nih.gov\/watch=44694<\/strong><\/a><\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>Ecco un\u2019istantanea della sua presentazione:<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>Il Dr. Blackstone e la Fondazione Carter si baseranno sullo Studio sulla Storia Naturale dell\u2019HSP del Boston Children\u2019s Hospital (descritto sopra) per progettare eventuali futuri studi clinici.<\/p>\n        <!-- \/wp:paragraph -->\n      <\/div>\n    <\/div>\n    <!-- \/wp:ghostkit\/accordion-item -->\n\n    <!-- wp:ghostkit\/accordion-item {\"titleTag\":\"h2\",\"slug\":\"accordion-mutational-cluster-causing-more-severe-spg3a\"} -->\n    <div class=\"ghostkit-accordion-item\" data-accordion=\"accordion-mutational-cluster-causing-more-severe-spg3a\">\n      <h2 class=\"ghostkit-accordion-item-heading\">\n        <button type=\"button\" id=\"accordion-mutational-cluster-causing-more-severe-spg3a-button\" aria-expanded=\"false\" aria-controls=\"accordion-mutational-cluster-causing-more-severe-spg3a-content\">\n          <span class=\"ghostkit-accordion-item-label\">Gruppo di Mutazioni che Causa un SPG3A Pi\u00f9 Grave<\/span>\n          <span class=\"ghostkit-accordion-item-collapse\">\n            <svg class=\"ghostkit-svg-icon\" width=\"24\" height=\"24\" viewBox=\"0 0 24 24\" fill=\"none\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\">\n              <path d=\"M9.21967 6.2197C9.51256 5.9268 9.98744 5.9268 10.2803 6.2197L15.5303 11.4697C15.8232 11.7626 15.8232 12.2374 15.5303 12.5303L10.2803 17.7803C9.98744 18.0732 9.51256 18.0732 9.21967 17.7803C8.92678 17.4874 8.92678 17.0126 9.21967 16.7197L13.9393 12L9.21967 7.2803C8.92678 6.9874 8.92678 6.5126 9.21967 6.2197Z\" fill=\"currentColor\"><\/path>\n            <\/svg>\n          <\/span>\n        <\/button>\n      <\/h2>\n      <div id=\"accordion-mutational-cluster-causing-more-severe-spg3a-content\" class=\"ghostkit-accordion-item-content\" role=\"region\" aria-labelledby=\"accordion-mutational-cluster-causing-more-severe-spg3a-button\">\n        <!-- wp:paragraph -->\n        <p>I ricercatori Julian E. Alecu, Afshin Saffari, Catherine Jordan, Siddharth Srivastava, Craig Blackstone e Darius Ebrahimi-Fakhari hanno condotto un\u2019analisi trasversale su 537 pazienti con SPG3A, di cui 31 con varianti de novo di ATL1.<br><br>Hanno identificato che alcune varianti, situate all\u2019interno di un cluster di mutazioni tridimensionale, causano sintomi pi\u00f9 gravi che vanno oltre l\u2019HSP pura che colpisce solo gli arti inferiori. I sintomi pi\u00f9 complessi includono anomalie dello sviluppo neurologico, spasticit\u00e0 degli arti superiori, sintomi bulbari (disartria, disfagia, ecc.), neuropatia periferica e anomalie nelle immagini cerebrali.<br><br>Le varianti identificate in questo cluster sono: <strong>Ala350, Arg403, Arg415, Arg416, Asn355, Gly409, Gly410, Leu401, Lys407, Met347, Met408, Phe413, Pro344, Ser346, Ser398, Ser414, Tyr417, Val405<\/strong>.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:paragraph -->\n        <p>I loro risultati stabiliscono una relazione genotipo-fenotipo per le mutazioni di ATL1. Questo cluster di mutazioni guider\u00e0 le opzioni di trattamento future.<br><strong>\u200d<\/strong><br>Puoi leggere l\u2019abstract <a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/35925862\/\" target=\"_blank\" rel=\"noreferrer noopener\">qui<\/a>.<\/p>\n        <!-- \/wp:paragraph -->\n\n        <!-- wp:image {\"id\":151,\"sizeSlug\":\"full\",\"linkDestination\":\"none\"} -->\n        <figure class Planned-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"1355\" height=\"913\" src=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635f5d9b3010033d09384f85_Rectangle-18.png\" alt=\"\" class=\"wp-image-151\" title=\"\" srcset=\"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635f5d9b3010033d09384f85_Rectangle-18.png 1355w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635f5d9b3010033d09384f85_Rectangle-18-300x202.png 300w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635f5d9b3010033d09384f85_Rectangle-18-1024x690.png 1024w, https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635f5d9b3010033d09384f85_Rectangle-18-768x517.png 768w\" sizes=\"auto, (max-width: 1355px) 100vw, 1355px\" \/><\/figure>\n        <!-- \/wp:image -->\n      <\/div>\n    <\/div>\n    <!-- \/wp:ghostkit\/accordion-item -->\n  <\/div>\n  <!-- \/wp:ghostkit\/accordion -->\n<\/div>\n<!-- \/wp:group -->","protected":false},"excerpt":{"rendered":"<p>Ricerca Il Programma di Ricerca della Fondazione Carter La missione della Fondazione Carter \u00e8 rendere possibile lo sviluppo di terapie e trattamenti per i bambini affetti da paraplegia spastica ereditaria (HSP). Attualmente si concentra sulle due forme pi\u00f9 comuni di HSP, SPG3A e SPG4, con particolare attenzione alle mutazioni a esordio precoce e spesso condizioni [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"ghostkit_customizer_options":"","ghostkit_custom_css":"","ghostkit_custom_js_head":"","ghostkit_custom_js_foot":"","ghostkit_typography":"","footnotes":""},"class_list":["post-150","page","type-page","status-publish","hentry"],"blocksy_meta":{"background":{"background_type":"image","background_pattern":"type-1","background_image":{"attachment_id":154,"x":0,"y":0,"url":"https:\/\/kidswithspg3a.com\/wp-content\/uploads\/2025\/04\/635f4a6c6c5db63aa2f18407_Layer-0-1-613x1024.png"},"gradient":"linear-gradient(135deg,rgba(6,147,227,1) 0%,rgb(155,81,224) 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