{"id":9686,"date":"2022-06-22T11:00:29","date_gmt":"2022-06-22T10:00:29","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?p=9686"},"modified":"2023-02-10T08:54:38","modified_gmt":"2023-02-10T08:54:38","slug":"impact_of_r20","status":"publish","type":"post","link":"https:\/\/ring20researchsupport.co.uk\/nb\/2022\/06\/impact_of_r20\/","title":{"rendered":"Gjennomgang av virkningen av ringkromosom 20-syndrom"},"content":{"rendered":"
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Abstrakt<\/b>
Ringkromosom 20-syndrom (r(20-syndrom) er en ultrasjelden sykdom karakterisert av medikament-refrakt\u00e6r epilepsi, kognitiv svikt og atferdsproblemer. Forskning og studier er sv\u00e6rt begrenset p\u00e5 grunn av sjeldenheten til denne tilstanden. Det er imidlertid klart de lider med r(20)-syndrom og deres familier \u00f8nsker \u00e5 delta i forskning. Denne artikkelen unders\u00f8ker hvilken innvirkning Ring20 Research and Support UK CIO (Ring20) veldedighetspasientgruppe har p\u00e5 de som lider med r(20)-syndrom og deres familier. Resultatene viser deltakerne hadde godt av en f\u00f8lelse av fellesskap og \u00e5 bli tilbudt informasjon<\/p>

Ring20 (veldedighet) forbedrer pasientenes liv og er avgj\u00f8rende for fremtidig forskning p\u00e5 r(20)-syndrom.<\/p><\/blockquote>

Introduksjon<\/b>
Ringkromosom 20-syndrom (r(20)-syndrom) er en ekstremt sjelden tilstand der en av de to kopiene av kromosom 20 har dannet en ring i stedet for den typiske line\u00e6re kromosomstrukturen. Hvorfor dette skjer og hvordan strukturen p\u00e5virker genene er ukjent. Det er ofte forbundet med mental retardasjon og atferdsproblemer som kan v\u00e6re progressive, noen ganger g\u00e5r atferdsproblemene f\u00f8r epilepsien. Forel\u00f8pig er det ingen anbefalt behandling for r(20)-syndrom fordi anfallene vanligvis ikke responderer p\u00e5 de vanlige epilepsibehandlingene. Det er to forskjellige former for r(20)-syndrom: ikke-mosaikksyndrom, den alvorligste formen der ringen finnes i hver celle i kroppen, og den mer vanlige formen, mosaikksyndrom, hvor ringen bare finnes i en prosentandel av celler (Watson, 2014). Litteraturen viser til omtrent 200 pediatriske og voksne individer med r(20)-syndrom (Peron et al., 2020). Selv om r(20)-syndrom har en distinkt og gjenkjennelig epileptisk fenotype, er riktignok ikke r(20)-syndrom godt kjent blant kliniske genetikere og nevrologer. Derfor kan r(20)-syndrom v\u00e6re underdiagnostisert, spesielt i denne genomikkens alder.
Forskning p\u00e5 r(20)-syndrom er ganske sparsom, og p\u00e5 grunn av tilstandens ekstreme sjeldenhet kan ikke studier unders\u00f8ke store pr\u00f8ver. Noen har imidlertid pekt p\u00e5 en mulig sammenheng mellom antall affiserte celler og alderen for debut av epilepsi (Elens et al., 2012) og (Giardino et al., 2010). Daber et al. (2012) mener at nye teknologier knyttet til neste generasjons DNA- og RNA-sekvensering gir l\u00f8fte om \u00e5 belyse den n\u00f8yaktige ringkromosomstrukturen. Det har vist seg at pasienter med r(20)-syndrom og deres familier uunng\u00e5elig er sv\u00e6rt engasjerte og kunnskapsrike til deres medisinske behandling (Donald et al., 2020). De fleste er villige til \u00e5 delta i forskning, men det m\u00e5 v\u00e6re praktisk og realistisk for \u00e5 passe inn i de komplekse omsorgsprosessene. Arbeid med epilepsigrupper kan i stor grad forbedre rekrutteringen og forskningseffekten. Derfor trengs veldedige organisasjoner som Ring20 for \u00e5 koble pasienter og klinikere til videre forskning. Ring20 kan levere r\u00e5data og studiegrupper og skape en s\u00e5rt tiltrengt fellesskapsf\u00f8lelse mellom pasientgrupper og helsepersonell. Forskning tyder p\u00e5 at vi n\u00e6rmer oss et gjennombrudd for r(20) syndrom, men sakte p\u00e5 grunn av mangel p\u00e5 deltakere. Uten veldedige organisasjoner som Ring20 for \u00e5 st\u00f8tte disse studiene, vil hundrevis av mennesker bli negativt p\u00e5virket av r(20)-syndrom lenger enn n\u00f8dvendig.
Denne litteraturen beskriver hvordan Ring20 veldedighet p\u00e5virker livene til pasienter med r(20) syndrom. Funnene viser hvordan tilbudet av tjenester og st\u00f8tte forbedrer livskvaliteten for disse pasientene og deres n\u00e6re relasjonsliv ogs\u00e5. Veldedige organisasjoner som Ring20 er avgj\u00f8rende for velferden til lokalsamfunn, men ogs\u00e5 for \u00e5 bringe bevissthet gjennom utdanning, b\u00e5de for offentligheten og helsepersonell.<\/p>

Metodikk <\/b>
Deltakerne involverte totalt 44 personer deltok i en unders\u00f8kelse med 10 sp\u00f8rsm\u00e5l, deltakerne raste fra 18-65 \u00e5r med en gjennomsnittsalder p\u00e5 45. Med litt over halvparten av deltakerne var fra Storbritannia og en fjerdedel fra USA som vist i graf 2. Deltakerne var hovedsakelig direkte omsorgspersoner for personer med r(20)-syndrom, som satt p\u00e5 75% av deltakerne og 15% var r(20)-syndrompasienter. Prosedyren involverte alle med tilgang til lenken og samtykket, ble oppfordret til \u00e5 delta, deltakerne kunne ogs\u00e5 legge igjen kommentarer.
Materialer som sosiale medier og SurveyMonkey.com ble brukt til \u00e5 lage og distribuere sp\u00f8rreskjemaet. Deltakerne ble spurt \u00abHva synes du om Ring20 og st\u00f8tten og tjenestene vi tilbyr? Hvilke st\u00f8ttetjenester bruker du eller vil du bruke \u2013 vennligst kryss av for ALLE som passer..\u201d Punktene var som f\u00f8lger \u2013
1) F\u00f8lger oss p\u00e5 sosiale medier, for \u00e5 se hva som skjer.
2) Hjelpelinjer via e-post og samtaler.
3) \u00c5 v\u00e6re direkte forbundet med andre familier i landet ditt.
4) Familiekonferansearrangementer, m\u00f8te og h\u00f8ring fra eksperter.
5) M\u00e5nedlige nyhetsbrev.
6) Kaffe og chat sosialt.
7) Ring20 informasjonsnettsted
8) Velv\u00e6reverksteder.
9) \u00c5 v\u00e6re en del av et fellesskap, ikke f\u00f8le seg isolert
10) Tegneserier for pasientinformasjon.<\/p>

Resultater<\/b>
Tabell 1.
Tabellen under viser hvor mange stemmer som ble gitt for hvert punkt og prosentandelen av stemmene i forhold til antall deltakere.<\/p>

Punkt<\/strong><\/p><\/td>

Q1<\/strong><\/p><\/td>

Q2<\/strong><\/p><\/td>

Q3<\/strong><\/p><\/td>

Q4<\/strong><\/p><\/td>

Q5<\/strong><\/p><\/td>

Q6<\/strong><\/p><\/td>

Q7<\/strong><\/p><\/td>

Q8<\/strong><\/p><\/td>

Q9<\/strong><\/p><\/td>

Q10<\/strong><\/p><\/td><\/tr>

\u00a0<\/strong><\/p>

Nei. Stemmer<\/strong><\/p><\/td>

37<\/p><\/td>

19<\/p><\/td>

31<\/p><\/td>

24<\/p><\/td>

25<\/p><\/td>

23<\/p><\/td>

26<\/p><\/td>

21<\/p><\/td>

35<\/p><\/td>

18<\/p><\/td><\/tr>

\u00a0<\/strong><\/p>

Prosentdel<\/strong><\/p>

\u00a0<\/strong><\/p><\/td>

84<\/p><\/td>

43<\/p><\/td>

70<\/p><\/td>

55<\/p><\/td>

57<\/p><\/td>

52<\/p><\/td>

59<\/p>

\u00a0<\/p><\/td>

48<\/p><\/td>

80<\/p>

\u00a0<\/p><\/td>

40<\/p><\/td><\/tr><\/tbody><\/table>

Graf 1.
Grafen nedenfor illustrerer funnene fra tabell 1.<\/p>

\"\"<\/p>

Graf 2.
Grafen nedenfor viser hvor hver deltaker kom fra i prosent.<\/p>

\"\"<\/p>

Kommentarer seksjon 1.<\/b>
Deltakere A (PA) \u2013
"Jeg f\u00f8ler at alle disse tingene er veldig nyttige for ring20-samfunnet v\u00e5rt, siden vi er en s\u00e5 liten gruppe at det ikke er mye informasjon eller st\u00f8tte der ute ... s\u00e5 for meg er det veldig viktig \u00e5 holde kontakten med andre mennesker med ring20 og deres familier og ogs\u00e5 for \u00e5 se hvilken ny forskning som kan komme v\u00e5r vei"
PB \u2013
"Som en av de nyeste familiene som er ber\u00f8rt av R(20), er det bare s\u00e5 mye takknemlighet for \u00e5 finne dette fellesskapet og st\u00f8tten, og vite at vi ikke er alene. Jeg setter stor pris p\u00e5 den unders\u00f8kte vitenskapelige informasjonen, men ogs\u00e5 de virkelige historiene fra andre familier. N\u00e5r venner, familier, l\u00e6rere og v\u00e5re medisinske fagfolk har sp\u00f8rsm\u00e5l, har det v\u00e6rt utrolig nyttig \u00e5 sende dem lenken til nettstedet.\u00bb
PC \u2013
\u00abJeg liker \u00e5 vite at vi ikke er alene. Som du kan f\u00f8le deg s\u00e5 isolert og s\u00e5 fortvilet. Leger har s\u00e5 lite \u00e5 tilby oss at det har v\u00e6rt fantastisk at vi har blitt opps\u00f8kt til Unravel-prosjektet. Vi (foreldre, omsorgspersoner, pasienter) er alle i dette sammen og Ring 20 pasientst\u00f8tte er uvurderlig for oss. Det er absolutt ingen andre steder som er s\u00e5 godt informert om v\u00e5re spesifikke problemer.\u00bb
PD \u2013
"Jeg f\u00f8ler det er s\u00e5 viktig for hvert av disse punktene, noen ganger f\u00f8ler vi oss s\u00e5 lave og alene, men \u00e5 v\u00e6re knyttet til familier i sv\u00e6rt like omstendigheter kan f\u00e5 oss til \u00e5 f\u00f8le at vi er alle sammen og kan st\u00f8tte hverandre."<\/p>

Diskusjon<\/b>
Som du kan se av resultatene og kommentarene, har deltakerne stor nytte av st\u00f8tten Ring20 gir dem. Som vist i tabell 1, var mer enn halvparten av de 44 deltakerne enige om at 7 av 10 av Ring20-tjenestene som er oppf\u00f8rt var nyttige og positivt p\u00e5virket deres liv i \u00e5 mestre r(20)-syndrom. Litt mindre enn halvparten var enig i at to av 10 gjenstander var nyttige for \u00e5 forbedre livskvaliteten deres. Resultatene tyder p\u00e5 at tjenestene og st\u00f8tten Ring20 gir har en positiv innvirkning p\u00e5 r(20)-syndrompasienter og deres omsorgspersoner i \u00e5 klare \u00e5 mestre hverdagen.
Forskningen viser at personer som har r(20)-syndrom \u00f8nsker \u00e5 delta i fremtidige studier og at pasientledet forskning vil v\u00e6re gunstig i denne ekstremt sjeldne tilstanden. Oppsummert er Ring20s arbeid ikke bare til fordel for de som lider av r(20)-syndrom, men er ogs\u00e5 sv\u00e6rt viktig for videre forskning og s\u00e5rt tiltrengt videre studier av r(20)-syndrom for b\u00e5de \u00e5 forbedre pasientenes liv og utdanne helsepersonell.<\/p>

Referanser<\/b>
Daber, RD, Conlin, LK, Leonard, LD, Canevini, MP, Vignoli, A., Hosain, S., Brown, LW, & Spinner, NB (2012). Ringkromosom 20. European Journal of Medical Genetics, 55(5), 381\u2013387. https:\/\/doi.org\/10.1016\/j.ejmg.2012.02.004
Donald, G., Allison, W., Archana, D., Laura, C., & Thomas F, H. (2020). Vurdere rollen til ketogen kostholdsterapi i ringkromosom 20-syndrom: En pasientledet tiln\u00e6rming. ProQuest, 5(2), 295\u2013300. https:\/\/doi.org\/10.1002\/epi4.12387
Elens, I., Vanrykel, K., De Waele, L., Jansen, K., Segeren, M., Van Paesschen, W., Ceulemans, B., Boel, M., Frijns, J.-P., Buyse, G., & Lagae, L. (2012). Ringkromosom 20-syndrom: Elektroklinisk beskrivelse av seks pasienter og gjennomgang av litteratur. Epilepsi & Behavior, 23(4), 409\u2013414. https:\/\/doi.org\/10.1016\/j.yebeh.2012.02.008
Giardino, D., Vignoli, A., Ballarati, L., Recalcati, MP, Russo, S., Camporeale, N., Marchi, M., Finelli, P., Accorsi, P., Giordano, L., La. Briola, F., Chiesa, V., Canevini, MP, & Larizza, L. (2010). Genetiske unders\u00f8kelser p\u00e5 8 pasienter rammet av ring 20 kromosomsyndrom. BMC Medical Genetics, 11(1). https:\/\/doi.org\/10.1186\/1471-2350-11-146
Peron, A., Catusi, I., Recalcati, MP, Calzari, L., Larizza, L., Vignoli, A., & Canevini, MP (2020). Ringkromosom 20-syndrom: genetikk, kliniske egenskaper og overlappende fenotyper. Frontiers in Neurology, 11, 613035. https:\/\/doi.org\/10.3389\/fneur.2020.613035
Watson, A. (2014). Ring 20 forskning og st\u00f8tte. Ring20 Research and Support UK CIO. https:\/\/ring20researchsupport.co.uk\/<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"

Vil du vite hvilken innvirkning arbeidet til Ring20 (veldedighetsorganisasjonen) har? Les videre\u2026<\/p>","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","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":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","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":""},"categories":[17,84],"tags":[],"class_list":["post-9686","post","type-post","status-publish","format-standard","hentry","category-blog","category-news"],"yoast_head":"\nReviewing the Impact of Ring Chromosome 20 Syndrome - Ring20 Research and Support UK CIO<\/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:\/\/ring20researchsupport.co.uk\/nb\/2022\/06\/impact_of_r20\/\" \/>\n<meta property=\"og:locale\" content=\"nb_NO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Reviewing the Impact of Ring Chromosome 20 Syndrome - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"Want to know what impact the work of Ring20 (the charity) has? 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