{"id":3227,"date":"2020-04-15T10:44:29","date_gmt":"2020-04-15T15:44:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3227"},"modified":"2024-02-09T14:24:39","modified_gmt":"2024-02-09T14:24:39","slug":"lgmd-researcher-katherine-mathews","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/researcher-interview\/2020\/04\/15\/lgmd-researcher-katherine-mathews\/","title":{"rendered":"RICERCATORE LGMD: Katherine Mathews"},"content":{"rendered":"

Intervista di LGMD sulla ricerca<\/h2>\n
\"\"<\/figure>\n

RICERCATORE LGMD:\u00a0 <\/strong>\u00a0Katherine D. Mathews<\/p>\n

Affiliazione:\u00a0 <\/strong>Universit\u00e0 dell'Iowa, Dipartimenti di Pedagogia e Neurologia<\/p>\n

Ruolo o posizione:<\/strong> \u00a0\u00a0<\/p>\n

Professore, Dipartimenti di Pediatria e Neurologia<\/p>\n

Vicepresidenza di Indagine Cinica, Dipartimento di Pediatria<\/p>\n

Che tipo di istruzione e formazione ha seguito per arrivare alla sua posizione attuale?<\/strong><\/p>\n

Ho completato la specializzazione in pediatria, neurologia e neurologia infantile, quindi ho completato una borsa di studio in genetica. La mia ricerca di base si \u00e8 concentrata sulle basi genetiche della distrofia muscolare. In seguito, la mia carriera si \u00e8 logicamente concentrata sulla distrofia muscolare in ambito clinico.<\/p>\n

Cosa l'ha spinta a intraprendere una carriera nella ricerca e nello studio della distrofia muscolare in particolare?<\/strong><\/p>\n

L'interesse per la ricerca \u00e8 nato dal desiderio di contribuire a migliorare le cure a un livello pi\u00f9 ampio rispetto a quello dei pazienti che vedo in clinica. Quando ho iniziato la mia carriera, non conoscevamo le basi genetiche o molecolari della maggior parte delle distrofie muscolari, quindi non avevamo una base logica per sviluppare trattamenti. Inizialmente, il caso e la casualit\u00e0 hanno portato a concentrarsi sulla ricerca sulle distrofie muscolari, ma pi\u00f9 comprendevo le malattie e conoscevo i pazienti, pi\u00f9 mi impegnavo per questo gruppo di disturbi.\u00a0<\/p>\n

Quali argomenti state studiando?<\/strong><\/p>\n

\u00a0Mi occupo in particolare degli aspetti clinici delle distroglicanopatie, che comprendono sia la LGMD che la distrofia muscolare congenita. Faccio anche parte di uno sforzo collaborativo sostenuto dal CDC per comprendere l'epidemiologia di tutte le distrofie muscolari. Il nostro team fa parte del consorzio LGMD GRASP ed \u00e8 coinvolto in altri studi collaborativi sulla storia naturale. Infine, sono coinvolto in una serie di studi clinici sponsorizzati dall'industria che studiano potenziali trattamenti per le malattie neuromuscolari.<\/p>\n

In che modo il suo lavoro aiuter\u00e0 i pazienti? \u00c8 di natura pi\u00f9 scientifica o potrebbe diventare un trattamento per la LGMD.<\/strong>o MD<\/strong>in generale?<\/strong><\/p>\n

Il mio lavoro sulle distroglicanopatie dovrebbe contribuire a fornire le basi per la progettazione di futuri studi clinici e per la comprensione della storia naturale di queste malattie, al fine di curare meglio i pazienti attuali. Allo stesso modo, il lavoro di epidemiologia \u00e8 importante per comprendere la storia naturale dei diversi tipi di distrofia muscolare e per le aziende che intendono progettare studi terapeutici: devono sapere quanti pazienti ci sono per determinare come progettare uno studio che sia fattibile e realistico. Spero che gli sforzi dei nostri team contribuiscano a migliorare la gestione dei pazienti affetti da distrofie muscolari.\u00a0<\/p>\n

Cosa vorrebbe che i pazienti e gli altri interessati alla LGMD sapessero sulla ricerca (sui vostri progetti e sul campo in generale)?<\/strong><\/p>\n

I pazienti devono capire che anche rispondere a semplici domande sugli esseri umani \u00e8 spesso un lavoro lento. Questo \u00e8 particolarmente vero per le malattie rare. Gli esseri umani sono complicati e sono molti gli elementi che contribuiscono alla variazione dei risultati, sia fattori genetici che non genetici. In parte a causa di questa variabilit\u00e0, gli studi di trattamento devono essere progettati con molta attenzione. \u00c8 probabile che alcuni studi terapeutici non mostrino benefici. L'unico studio terapeutico che \u00e8 un vero fallimento \u00e8 quello che non riesce a rispondere alla domanda sul beneficio e sulla sicurezza. Uno studio terapeutico che dimostra che una certa terapia non migliora gli esiti \u00e8 uno studio di successo: ci permette di passare a un approccio terapeutico diverso.<\/p>\n

Cosa la ispira a continuare a lavorare in questo campo?<\/strong><\/p>\n

Mi sento molto fortunata ad interagire con i pazienti, le famiglie e i colleghi che incontro in questo lavoro. Loro sono la forza motrice principale. In secondo luogo, l'accelerazione della promessa di trattamenti significativi \u00e8 entusiasmante!<\/p>\n

In che modo i pazienti possono incoraggiarvi e aiutare il vostro lavoro?<\/strong><\/p>\n

\u00a0Partecipare alla ricerca secondo le proprie possibilit\u00e0. Essere un paziente o un soggetto di ricerca ben informato. Sostenere i finanziamenti in corso in questo campo (NIH, MDA, fondazioni specifiche per la malattia, singoli ricercatori). Parlate con i vostri senatori e rappresentanti federali dell'importanza di un sostegno continuo da parte del NIH alla ricerca in generale, alle malattie neuromuscolari e alla vostra malattia in particolare. Raccontate la vostra storia.\u00a0<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4376,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[91,92],"tags":[],"class_list":["post-3227","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-researcher-interview","category-researcher"],"acf":[],"yoast_head":"\nLGMD RESEARCHER: Katherine Mathews - LGMD Awareness Foundation<\/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:\/\/www.lgmd-info.org\/it\/researcher-interview\/2020\/04\/15\/lgmd-researcher-katherine-mathews\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta 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