{"id":2272,"date":"2020-12-17T13:43:17","date_gmt":"2020-12-17T12:43:17","guid":{"rendered":"http:\/\/mmcup.se\/?page_id=2272"},"modified":"2026-05-04T12:49:15","modified_gmt":"2026-05-04T11:49:15","slug":"manual-for-deltagarformular","status":"publish","type":"page","link":"https:\/\/mmcup.se\/?page_id=2272","title":{"rendered":"Manual f\u00f6r &#8221;Deltagarformul\u00e4r&#8221;"},"content":{"rendered":"\n<p class=\"has-medium-font-size wp-block-paragraph\">L\u00e4s \u00e4ven <a href=\"http:\/\/mmcup.se\/?page_id=2124\">&#8221;Inmatningsanvisningar<\/a>&#8221; f\u00f6r registrering i 3C!<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Deltagarformul\u00e4ret fylls i efter att personen eller personens lagliga f\u00f6retr\u00e4dare f\u00e5tt muntlig och skriftlig information om MMCUP, f\u00f6rutsatt att man inte sagt nej till deltagande. <br>Information f\u00f6r <a href=\"http:\/\/mmcup.se\/?page_id=1789\">utskrift finns h\u00e4r<\/a>. Om man v\u00e4ljer att dela ut l\u00e4ttl\u00e4st version ska alltid den fullst\u00e4ndiga patientinformationen l\u00e4mnas ut ocks\u00e5.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Formul\u00e4ret m\u00e5ste uppdateras varje \u00e5r och d\u00e4remellan vid behov. Personuppgifter och region d\u00e4r personen bor h\u00e4mtas till alla andra formul\u00e4r i MMCUP, innan de kan fyllas i. Det n\u00f6dv\u00e4ndigt att uppdatera deltagarformul\u00e4ret snarast om personen flyttar till annan region (fd l\u00e4n\/landsting) och sjukv\u00e5rdsregion (se sista stycket).<br>Inloggningsr\u00e4tt till MMCUP \u00e4r kopplat till den region registrerande personal arbetar i. Personal p\u00e5 regionsjukhusen i Ume\u00e5, Uppsala, Stockholm\/Solna, Link\u00f6ping, G\u00f6teborg och Lund\/Malm\u00f6 kan f\u00e5 inloggningsr\u00e4tt till landstingen inom respektive sjukv\u00e5rdsregion.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Kontrollera f\u00f6rst att du \u00e4r inloggad i den region d\u00e4r patienten \u00e4r bosatt. I databasen loggas automatiskt datum och tidpunkt och vem som registrerar eller uppdaterar\/\u00e4ndrar i formul\u00e4ret (inloggad). Datum i pappersformul\u00e4ret finns med om 3C-systemet skulle ligga nere, vilket sker i samband uppdatering.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Uppf\u00f6ljningsorsak avg\u00f6r vilka variabler som visas i vissa inmatningsformul\u00e4r. I kategorin \u201dRyggm\u00e4rgsbr\u00e5ck\u201d ing\u00e5r MMC, lipoMMC och \u00e4ven medf\u00f6dda br\u00e5ckbildningar \u00f6ver ryggraden, som man bed\u00f6mer inte inneh\u00e5lla nervv\u00e4vnad (meningocelen).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Region (fd l\u00e4n\/landsting) \u00e4r d\u00e4r personen \u00e4r bosatt. Sjukv\u00e5rdsregion \u00e4r den region d\u00e4r personen \u00e4r bosatt ing\u00e5r i, dit den h\u00f6gspecialiserade (terti\u00e4ra) sjukv\u00e5rden \u00e4r knuten. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Samordningsansvarig verksamhet = ensamordningsansvarig verksamhet, som har kunskap om patientgruppen, samordnar sjukv\u00e5rds- och habiliteringsinsatser, kallar till uppf\u00f6ljning och finns tillg\u00e4nglig per patienten. <br>Samordningsansvarig verksamhet \u00e4r vanligen habiliteringsverksamhet, men kan ocks\u00e5 vara andra instanser. <br>Att samordningsansvarig verksamhet finns f\u00f6r personer med ryggm\u00e4rgsbr\u00e5ck (MMC) \u00e4r en av MMCUP&#8217;s kvalitetsindikatorer.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Brukaren och v\u00e5rdnadshavare ska f\u00e5 muntlig och\/eller skriftlig information om MMCUP. <a rel=\"noreferrer noopener\" href=\"http:\/\/mmcup.se\/wp-content\/uploads\/2022\/01\/Blankett_-samtycke-att-medverka-i-MMCUP_220124.docx\" data-type=\"URL\" target=\"_blank\"> <\/a><br>Datum f\u00f6r n\u00e4r informationen \u00e4r given, samt vem som informerats (personen sj\u00e4lv eller legal f\u00f6retr\u00e4dare) och om man medger eller avb\u00f6jer medverkan ska sedan registreras i deltagarformul\u00e4ret av v\u00e5rdgivaren (habiliteringsenhet eller motsvarande) i databasen. Dessutom ska detta beslut registreras i personens patientjournal av v\u00e5rdgivare. F\u00f6r barn upp till 12 \u00e5r, \u00e4r det f\u00f6r\u00e4lder\/v\u00e5rdshavare som tillfr\u00e5gas om samtycke. Vid 13 \u00e5r och 18 \u00e5r tillfr\u00e5gas ton\u00e5ringen respektive den unge vuxne om samtycke. Inga skriftliga medgivande samlas in.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Separat medgivande f\u00f6r att data f\u00e5r anv\u00e4ndas i forskningsstudier samlas <strong>inte<\/strong> in. Medverkan i kvalitetsregistret och v\u00e5rdprogrammet MMCUP inneb\u00e4r att insamlat material anv\u00e4nds f\u00f6r specificerad forskning efter tillst\u00e5nd fr\u00e5n Etikpr\u00f6vningsmyndigheten.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">F\u00f6r att f\u00e5 flytta deltagarens uppgifter till annan region uti fall att deltagaren flyttar till ny region, beh\u00f6ver deltagaren ge sitt medgivande f\u00f6r detta. Ange deltagarens inst\u00e4llning (ja\/ nej) till att till\u00e5ta att deltagarens inmatade uppgifter f\u00f6ljer med deltagaren till ny region.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">N\u00e4r en deltagare \u00f6nskar <strong>avsluta sin medverkan<\/strong> i registret ska v\u00e5rdgivande enhet (deltagarens habiliterings- eller sjukv\u00e5rdsenhet) markera i formul\u00e4ret att personen inte \u00f6nskar delta samt vilket datum detta g\u00e4ller.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">I \u201d<a href=\"http:\/\/mmcup.se\/?page_id=2153\">Processbeskrivning ut- och inflyttning\u201d<\/a> finns bland annat anvisningar om hur man ska f\u00f6rfara n\u00e4r en patienten flyttar till annan region. <br>Om en patient avlider f\u00f6rs det in i deltagarformul\u00e4ret inklusive datum f\u00f6r d\u00f6dsfall och d\u00f6dsorsak.<\/p>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\"><a href=\"http:\/\/mmcup.se\/wp-content\/uploads\/2022\/01\/Deltagarformular-MMCUP-manual.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">F\u00f6r utskrift<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">2025-09-17<\/p>\n<div class=\"pdfprnt-buttons pdfprnt-buttons-page pdfprnt-bottom-left\"><a href=\"https:\/\/mmcup.se\/index.php?rest_route=%2Fwp%2Fv2%2Fpages%2F2272&print=print\" class=\"pdfprnt-button pdfprnt-button-print\" target=\"_blank\" ><img data-recalc-dims=\"1\" decoding=\"async\" src=\"https:\/\/i0.wp.com\/mmcup.se\/wp-content\/plugins\/pdf-print\/images\/print.png?ssl=1\" alt=\"image_print\" title=\"Print Content\" \/><span class=\"pdfprnt-button-title pdfprnt-button-print-title\">Skriv ut sida<\/span><\/a><\/div>","protected":false},"excerpt":{"rendered":"<p>L\u00e4s \u00e4ven &#8221;Inmatningsanvisningar&#8221; f\u00f6r registrering i 3C! Deltagarformul\u00e4ret fylls i efter att personen eller personens lagliga f\u00f6retr\u00e4dare f\u00e5tt muntlig och skriftlig information om MMCUP, f\u00f6rutsatt att man inte sagt nej till deltagande. Information f\u00f6r utskrift finns h\u00e4r. Om man v\u00e4ljer att dela ut l\u00e4ttl\u00e4st version ska alltid den fullst\u00e4ndiga patientinformationen l\u00e4mnas ut ocks\u00e5. Formul\u00e4ret m\u00e5ste [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-2272","page","type-page","status-publish","hentry"],"jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages\/2272","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/mmcup.se\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=2272"}],"version-history":[{"count":21,"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages\/2272\/revisions"}],"predecessor-version":[{"id":4454,"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages\/2272\/revisions\/4454"}],"wp:attachment":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=2272"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}