{"id":2308,"date":"2018-10-24T10:59:24","date_gmt":"2018-10-24T15:59:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2308"},"modified":"2018-10-24T10:59:24","modified_gmt":"2018-10-24T15:59:24","slug":"lgmd-researcher-linda-lowes","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/researcher-interview\/2018\/10\/24\/lgmd-researcher-linda-lowes\/","title":{"rendered":"BADACZ LGMD: Linda Lowes"},"content":{"rendered":"

LGMD \"Wywiad w centrum uwagi na temat bada\u0144\"<\/p>\n

BADACZ LGMD:\u00a0 <\/strong>\u00a0Linda Lowes\u00a0\"\"<\/a><\/p>\n

Przynale\u017cno\u015b\u0107:\u00a0 <\/strong>Nationwide Children's Hospital, Columbus, Ohio USA<\/p>\n

Rola lub stanowisko:\u00a0\u00a0<\/strong>G\u0142\u00f3wny badacz, Instytut Badawczy w Nationwide Children's Hospital, profesor nadzwyczajny na Wydziale Pediatrii Uniwersytetu Stanowego Ohio<\/p>\n

Jakie wykszta\u0142cenie i szkolenie zdoby\u0142e\u015b, aby osi\u0105gn\u0105\u0107 obecne stanowisko?<\/strong><\/p>\n

Pocz\u0105tkowo uzyska\u0142em tytu\u0142 licencjata na Uniwersytecie Stanowym Ohio, aby zosta\u0107 fizjoterapeut\u0105. Po pracy jako klinicysta zda\u0142em sobie spraw\u0119, \u017ce pasjonuj\u0105 mnie badania kliniczne, wi\u0119c wr\u00f3ci\u0142em do szko\u0142y na Uniwersytecie Hahnemanna, aby uzyska\u0107 tytu\u0142 doktora. Przez ostatnie 10 lat pracowa\u0142em nad rzadkimi chorobami nerwowo-mi\u0119\u015bniowymi.<\/p>\n

Co sprawi\u0142o, \u017ce zdecydowa\u0142e\u015b si\u0119 na karier\u0119 naukow\u0105, a w szczeg\u00f3lno\u015bci na badanie dystrofii mi\u0119\u015bniowej?<\/strong><\/p>\n

Po uko\u0144czeniu studi\u00f3w podj\u0105\u0142em prac\u0119 nauczyciela na Uniwersytecie Stanowym Ohio. Szybko okaza\u0142o si\u0119, \u017ce moj\u0105 pasj\u0105 s\u0105 badania kliniczne. Odszed\u0142em z nauczania, aby do\u0142\u0105czy\u0107 do Centrum Terapii Genowej w Instytucie Badawczym w Nationwide Children's i pracowa\u0107 z liderami w tej dziedzinie, takimi jak Jerry Mendell, Kevin Flanigan i Louise Rodino-Klapac. Pracuj\u0119 r\u00f3wnie\u017c w naszych klinikach chor\u00f3b nerwowo-mi\u0119\u015bniowych. Obserwowanie, jak nauka podstawowa i pacjenci \u0142\u0105cz\u0105 si\u0119 ze sob\u0105, to niesamowita okazja.<\/p>\n

Jakie tematy studiujesz?<\/strong><\/p>\n

Kieruj\u0119 zespo\u0142em badaczy zajmuj\u0105cych si\u0119 wyborem i rozwojem miar wynik\u00f3w. Wraz z Lindsay Alfano, Natalie Miller i Megan Iammarino zbieramy dane dotycz\u0105ce historii naturalnej os\u00f3b z dowoln\u0105 postaci\u0105 LGMD, aby oceni\u0107, kt\u00f3re miary s\u0105 wa\u017cne dla pacjenta, wiarygodne i wra\u017cliwe na zmiany. Dane z historii naturalnej pos\u0142u\u017c\u0105 r\u00f3wnie\u017c jako kontrola zewn\u0119trzna, dzi\u0119ki czemu dane dotycz\u0105ce leczenia b\u0119dzie mo\u017cna por\u00f3wna\u0107 z tradycyjnym tempem spadku funkcjonalnego.<\/p>\n

W jaki spos\u00f3b Twoja praca pomo\u017ce pacjentom? Czy ma ona bardziej naukowy charakter, czy te\u017c mo\u017ce sta\u0107 si\u0119 metod\u0105 leczenia LGMD?<\/strong>lub MD<\/strong>w og\u00f3le?<\/strong><\/p>\n

Nasza praca pomo\u017ce przyspieszy\u0107 proces bada\u0144 klinicznych, zapewniaj\u0105c, \u017ce zebrane dane dok\u0142adnie odzwierciedlaj\u0105 wszelkie rzeczywiste zmiany w umiej\u0119tno\u015bciach. Posiadanie odpowiedniej miary wyniku mo\u017ce pozwoli\u0107 na kr\u00f3tsze i\/lub mniejsze badanie.<\/p>\n

Co chcia\u0142by\u015b, aby pacjenci i inne osoby zainteresowane LGMD wiedzia\u0142y o badaniach (twoich w\u0142asnych projektach i og\u00f3lnie o tej dziedzinie)?<\/strong><\/p>\n

Stale poszukujemy os\u00f3b z LGMD do udzia\u0142u w naszych badaniach historii naturalnej. Ochotnicy s\u0105 proszeni o wykonywanie czynno\u015bci r\u0119kami i nogami, odpowiadanie na kwestionariusze i umo\u017cliwienie nam przetestowania si\u0142y mi\u0119\u015bni. Udzia\u0142 w naszych badaniach wi\u0105\u017ce si\u0119 z bardzo niewielkim, je\u015bli w og\u00f3le jakimkolwiek ryzykiem, a wygenerowane dane pomagaj\u0105 w prowadzeniu pr\u00f3b leczenia.<\/p>\n

Co inspiruje Ci\u0119 do dalszej pracy w tej dziedzinie? <\/strong><\/p>\n

Niesamowite post\u0119py w terapii genowej sprawiaj\u0105, \u017ce istnieje realna mo\u017cliwo\u015b\u0107, \u017ce jeszcze za mojego \u017cycia b\u0119dziemy mogli znacz\u0105co wp\u0142yn\u0105\u0107 na \u017cycie os\u00f3b z LGMD.<\/p>\n

W jaki spos\u00f3b pacjenci mog\u0105 Ci\u0119 zach\u0119ci\u0107 i pom\u00f3c Ci w pracy?<\/strong><\/p>\n

Prosz\u0119 o kontakt pod adresem NMDtrialinfo@nationwidechildrens.org<\/a>\u00a0\u00a0 Zazwyczaj badamy ochotnik\u00f3w w Columbus w stanie Ohio, ale organizujemy r\u00f3wnie\u017c zbi\u00f3rki danych w spo\u0142eczno\u015bciach z du\u017c\u0105 liczb\u0105 os\u00f3b z LGMD lub na konferencjach pacjent\u00f3w.<\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview on Research\u201d LGMD RESEARCHER:\u00a0 \u00a0Linda Lowes\u00a0 Affiliation:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":2307,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[91,92],"tags":[],"class_list":["post-2308","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-researcher-interview","category-researcher"],"acf":[],"yoast_head":"\nLGMD RESEARCHER:\u00a0 \u00a0Linda Lowes - 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\/pl\/researcher-interview\/2018\/10\/24\/lgmd-researcher-linda-lowes\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD RESEARCHER:\u00a0 \u00a0Linda Lowes - 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