La gano cututtuka masu wuya da wuri Ya zama muhimmin abu a fannin kiwon lafiya a Spain, inda Andalusia da Castilla-La Mancha suka kasance yankuna biyu da suka fi daukar matakai a bayyane. Ta hanyar sabbin tsare-tsare, gwaje-gwajen kwayoyin halitta na zamani, da kuma ayyukan gwaji don tantance kwayoyin halitta ga jarirai, gwamnatocin suna neman rage lokacin ganewar asali da inganta hanyoyin magani. magungunan marayu da aka tallafa wa a Spain.
Waɗannan shirye-shirye ba wai kawai suna da nufin ƙarfafawa ba ne shirye-shiryen tantance jarirai da gwajin kwayoyin halittaamma kuma don bayar da cikakkiyar kulawa ga marasa lafiya da iyalansu, tare da shawarwari da dama, kayan aikin likitanci na zamani, da kuma haɗin gwiwa da bincike. Duk wannan da manufa bayyananniya: tabbatar da cewa waɗanda ke rayuwa da wata cuta mai wuya ba su sake zama waɗanda aka manta da su a cikin tsarin ba.
Andalusia ta ƙarfafa gano cututtuka da wuri tare da sabon shiri kan cututtuka masu wuya
Gwamnatin yankin Andalus ta gabatar da wani An Sabunta Tsarin Kulawa ga Mutanen da Cututtuka Masu Yawa Suka Shafi wanda ke sabunta dabarun da aka fara a shekarar 2008 kuma ya daidaita shi da ci gaban kimiyya da fasaha na yanzu. Shirin yana da nufin kusan rabin miliyan 'yan Andalus waɗanda ke fama da ƙarancin kamuwa da cututtuka kuma suna mai da hankali, ta hanya ta musamman, kan gano cututtukan gado da wuri.
Shugaban ƙasar Andalusian, Juanma MorenoYa yi bayani a Asibitin Jami'ar Virgen del Rocío da ke Seville cewa shirin zai kunshi jarin da ya zarce Yuro miliyan 8,5 har zuwa shekarar 2029Za a yi amfani da wannan kuɗaɗen, a tsakanin wasu dalilai, don faɗaɗa shirye-shiryen tantancewa da kuma gabatar da su gwaje-gwaje masu zurfi don gano canje-canjen kwayoyin halitta da kuma ƙirƙirar wurare don kulawa mai kyau ga waɗannan marasa lafiya.
A cewar gwamnatin yankin, shirin yana da nufin taimaka wa mutanen da ke fama da cututtuka marasa galihu kada ka kasance ba a gani ga tsarin kiwon lafiya ko kuma ga al'umma baki ɗaya. Saboda haka, an fi mai da hankali kan ƙarfafa albarkatun ƙwararrun da ke aiki a wannan fanni da kuma inganta hanyoyin da za a bi wajen gano cutar domin a yi bincike da wuri da kuma daidai.
Shirin ya dogara ne akan wani bincike da hukumomin lafiya suka amince da shi: Yawancin cututtukan da ba kasafai ake samu ba suna da asalin kwayoyin halitta. kuma yana bayyana kansa a farkon shekaru, don haka gano canje-canje da wuri-wuri na iya yin bambanci a cikin hasashen yanayi, ingancin rayuwa da kuma samun takamaiman hanyoyin magancewa.
Moreno ya dage cewa an tsara wannan shiri ne domin a tabbatar da cewa an yi shi daidai. "da kuma ga marasa lafiya" kuma ya jaddada buƙatar magance waɗannan cututtukan da hankali, tausayi da hangen nesa na dogon lokaci, ba wai kawai ga takamaiman aikin likita a cikin shawarwarin ba.
Gwajin kwayoyin halitta mai zurfi da faɗaɗa bincike a cikin tsarin Andalus
Daga cikin manyan matakan da aka ɗauka a cikin sabon tsarin Andalusian akwai haɗa dabarun ganewar asali na zamani don gano cututtukan da ba a taɓa gani ba da wuri. Wannan ya ƙunshi wuce gwaje-gwajen gargajiya na biochemical da haɗa gwaje-gwajen da za su iya gano bambance-bambancen kwayoyin halitta waɗanda za su iya haifar da cututtuka masu tsanani amma waɗanda za a iya magance su idan aka magance su cikin lokaci.
Hukumar Lafiya ta Andalus ta fara faɗaɗa shirye-shiryen tantance jarirai da masu juna biyuWannan ya haɗa da ƙara sabbin cututtuka ga sanannen "gwajin diddige" da faɗaɗa gwaje-gwaje ga mata masu juna biyu waɗanda ke da abubuwan haɗari. Bugu da ƙari, ƙarin haɓakawa ga Shawarwari kafin ɗaukar ciki a Kula da Lafiyar Farkodon tantance asali da kuma yiwuwar haɗarin kwayoyin halitta kafin daukar ciki.
Wani ɓangaren kuma shine inganta aikin a cikin Gudanar da bayanai na asibitiZa a haɗa buƙatun gwajin kwayoyin halitta cikin bayanan lafiyar lantarki, wanda hakan zai sauƙaƙa wa ƙungiyoyin kiwon lafiya samun duk bayanan da suka dace ba tare da kwafi gwaje-gwaje ko ɓata lokaci akan takardu ba. Ana kuma ganin Telemedicine a matsayin babbar hanyar kawo kulawa ta musamman zuwa yankunan da ba su da cibiyoyin tura marasa lafiya.
Tsarin Andalusian bai takaita ga cututtukan da aka riga aka gano ba. Ya haɗa da Takamaiman ayyuka ga shari'o'in da ba a gano cutar baAn shafe shekaru da dama ana gwaje-gwaje ga marasa lafiya ba tare da samun amsa mai gamsarwa ba. Manufar ita ce a ƙarfafa ka'idojin waɗannan shari'o'in masu rikitarwa da kuma sauƙaƙa tura su ga ƙungiyoyi masu ƙwarewa a fannin kwayoyin halitta da cututtuka masu wuya.
A lokaci guda kuma, al'umma tana kula da cibiyar sadarwa ta cibiyoyin bincike guda 23 da ke da alaƙa da cututtuka masu wuyaWaɗannan an ƙara musu wasu sassan yanki na musamman. Tsarin da ake amfani da shi a yanzu yana da nufin haɗa wannan hanyar sadarwa da kuma daidaita ta, ta yadda marasa lafiya za su iya tafiyar da tsarin ba tare da shingen gudanarwa ba kuma ba tare da raguwar kulawa ba.
Shawarwari da dama da kuma cikakken tallafi ga iyalai
Ɗaya daga cikin abubuwan da ke maimaitawa a cikin dabarun Andalusian shine ƙirƙirar shawarwari masu fannoni daban-daban wanda, a cikin tsari ɗaya, ƙwararru daga fannoni daban-daban suna haɗuwa: ƙwararrun likitoci, ma'aikatan jinya, ilimin halayyar ɗan adam, aikin zamantakewa har ma da bayanan ilimi idan yanayin ya buƙaci hakan.
Manufar ita ce marasa lafiya da iyalansu su karɓi magani cikakkiyar amsa mai yiwuwa a cikin da'ira ɗayaWannan yana guje wa tafiye-tafiye marasa amfani tsakanin ayyuka kuma yana rage jerin jira don gwaje-gwaje ko kimantawa masu mahimmanci. Waɗannan sassan suna da nufin haɗa fannoni na lafiya, zamantakewa, da ilimi, tare da mai da hankali na musamman kan aiki da haɗa makarantu.
Shirin ya kuma haɗa da shirye-shirye na musamman don cututtukan da ba a gano su bada kuma sabunta ka'idojin kwayoyin halitta da kuma haɗa sabbin bayanan ƙwararru a cikin fayil ɗin jama'a, kamar na'urar motsa jiki ta ƙafa, don magance takamaiman matsalolin da ke da alaƙa da wasu cututtuka marasa galihu.
Hukumar ta jaddada cewa ba za a iya raba inganta kulawa da tallafin motsin rai da na tunaniIyalai da yawa suna jure wa shekaru na rashin tabbas, nauyin kuɗi, da matsin lamba na kansu, don haka an shirya ƙarfafa albarkatun lafiyar kwakwalwa da hanyoyin ba da shawara a duk lokacin da ake gudanar da bincike da kuma a lokacin jiyya da kuma lokacin bin diddigin cutar.
Domin tabbatar da cewa matakan ba su kasance a kan takarda kawai ba, shirin zai haɗa da ƙungiyar sa ido Wannan hukumar za ta kula da aiwatar da ita, ta tantance sakamakonta, sannan ta ci gaba da sadarwa da ƙungiyoyin marasa lafiya da kuma ɓangarorin da ke cikinta. Za ta ɗauki nauyin gano matsaloli a aikace-aikacen shirin da kuma ba da shawarar yin gyare-gyare idan ya zama dole.
Aikin GENEBORN: Binciken Kwayoyin Halittar Jini a Spain
Duk da cewa Andalusia tana ƙarfafa dabarunta na cin gashin kanta, Asibitin Jami'ar Toledo yana shiga a matsayin ƙungiya mai alaƙa a cikin Aikin Halittar Jini na GENOTALwani shiri na jihar baki daya wanda ke da nufin hada kan jama'a gwajin kwayoyin halitta a cikin kulawar jarirai na Tsarin Lafiya na Ƙasa.
Wannan aikin gwaji, wanda aka tsara ta hanyar Cibiyar Nazarin Lafiyar Jama'a don Cututtuka Masu Rarrafe (CIBERER) kuma an ba da kuɗin ta hanyar Ramon Areces Foundation, yana la'akari da cikakken jerin kwayoyin halitta (WGS) na ɗan fiye da Jarirai 1.000Manufar ita ce a tantance ko wannan samfurin tantancewa yana ba da damar ganowa da wuri cututtukan kwayoyin halitta masu aikida yawa daga cikinsu ba kasafai suke faruwa ba, kafin alamun su bayyana.
Sabis ɗin Halittar Halitta na cibiyar Toledo, wanda ke ƙarƙashin jagorancin Carles de DiegoTana shiga tare da wata ƙungiya mai fannoni daban-daban waɗanda suka haɗa da masana kimiyyar kwayoyin halitta, likitocin jijiyoyi, likitocin jarirai, da ƙwararrun magunguna. Aikinta yana da ɓangarori biyu: a gefe guda, amfani da fasahar tsara tsari, da kuma fassara wannan bayanin zuwa shawarwari masu amfani na asibiti don sa ido kan jariri.
Babban sabon abu na GENEBORN yana cikin gaskiyar cewa, ta hanyar dabara ɗaya, yana yiwuwa a bincika ɗaruruwan kwayoyin halitta da ke da alaƙa da cututtuka masu tsanani amma waɗanda za a iya magance su idan an gano su da wuri. Dangane da bayanan aikin, za a yi nazarin su 481 kwayoyin halitta nasaba da Cututtuka 508 masu iya aikiYawancinsu suna da metabolism, wanda ke nufin suna da alaƙa da juna. magunguna 183 wanda zai iya inganta hasashen.
Wannan hanyar tana da nufin yin wani mataki a gaba da hanyoyin kimiyyar sinadarai na gargajiya, ta hanyar bayar da cikakkun bayanai masu faɗi da zurfi. Pharmacogenomics Yana fitowa a matsayin babbar hanyar inganta hanyoyin magance cututtuka da kuma rage tasirin miyagun ƙwayoyi, matsalar da ke haifar da ƙarin shawarwari, zuwa asibiti da kuma matsaloli da za a iya kauce musu.
Daga IMPaCT zuwa Kwayoyin Halitta Miliyan 1: Haɗawa da Turai da maganin daidaito
GENEBORN ba ta fito daga komai ba, sai dai tana amfani da kayayyakin more rayuwa da aka ƙirƙira don aikin. IMaCT, wanda ke tukawa Carlos III Cibiyar Lafiya don tura magungunan kwayoyin halitta a cikin Tsarin Lafiya na Ƙasa. Wannan shiri na baya ya mayar da hankali kan ganewar asali na cututtuka masu wuya a cikin manya da yara, samar da kayan aiki, bayanai da tsare-tsare waɗanda yanzu ake sake amfani da su don tantance jarirai.
Bugu da ƙari, aikin yana da cikakken mayar da hankali kan Turai. Ɗaya daga cikin manufofinsa shine kafa hanyoyin sadarwa tare da sauran cibiyoyin ƙasa da ƙasa waɗanda ke haɓaka shirye-shirye makamancin haka, waɗanda za su ba da damar raba bayanai kan cututtuka masu wuya, magunguna masu tasowa, da kuma bambance-bambancen kwayoyin halitta marasa kyau.
A wannan mahallin, Spain ma tana shiga cikin babban aikin Turai Kwayoyin Halitta Miliyan 1Aikin yana da nufin tattara bayanai game da kwayoyin halitta daga 'yan ƙasar Turai miliyan ɗaya don zurfafa fahimtarmu game da kwayoyin halittar ɗan adam da kuma sauƙaƙe haɓaka sabbin hanyoyin magani. Manufar ita ce za a yi amfani da bayanan da aka samar don dalilai na likita da kimiyya, koyaushe a ƙarƙashin ƙa'idodin ɗabi'a da kariyar bayanai.
An riga an ƙaddamar da irin waɗannan shirye-shirye a wasu ƙasashe, kamar BabySeq da Guardian a Amurka ko Binciken Kwayoyin Halittar Jarirai a Burtaniya, inda ake tsara tsarin kwayoyin halittar 100.000 jariraiManufar waɗannan shirye-shiryen ita ce tantance ko gwajin kwayoyin halitta zai iya maye gurbin gwajin metabolism na gargajiya, wani abu da masu haɓaka GENEBORN ke ɗauka a matsayin abin da zai yiwu.
Domin ci gaba a wannan hanyar, ya zama dole cikakken bita daga kwamitocin ɗa'a da kuma haɓaka cikakkun bayanai game da fom ɗin izini, waɗanda suka yi daidai da ƙa'idodin kariyar bayanai na Spain da Turai. Kwayoyin halitta ne kawai masu babban matakin shaidar kimiyya da kuma babban shiga ake nazari a kansu, kuma bambance-bambancen da aka rarraba a matsayin masu cutarwa ko kuma wataƙila masu cutarwa ne kawai aka ruwaito, bisa ga ƙa'idodin Kwalejin Nazarin Kwayoyin Halitta da Kwayoyin Halitta ta Amurka.
Idan aka haɗa, shirye-shiryen da aka ƙaddamar a Andalusia da ayyukan genomic kamar GENEBORN sun nuna yadda tsarin kiwon lafiya na Spain ke ɗaukar matakai masu ƙarfi don tabbatar da cewa gano cututtuka masu wuya da wuri Ya kamata ya daina zama wani abu daban kuma ya zama wani ɓangare na ayyukan kiwon lafiya na yau da kullun. Daga faɗaɗa gwaje-gwaje da gwaje-gwajen kwayoyin halitta zuwa ƙirƙirar asibitoci masu fannoni daban-daban da kuma haɗawa da hanyoyin sadarwa na magungunan daidaito na Turai, komai yana nuna samfurin inda ganewar asali ya zo da wuri, magani ya fi dacewa, kuma iyalai ba sa jin kaɗaici idan suka fuskanci cututtukan da, kodayake ba kasafai suke faruwa ba, suna da babban tasiri a rayuwarsu ta yau da kullun.
