Wannan shafin yanar gizon yana amfani da kukis domin mu iya ba ku damar kwarewa mafi kyau. Ana adana bayanin kuki a cikin burauzarka kuma yana aiki da ayyuka kamar gane da ku idan kun dawo zuwa shafin yanar gizon mu da kuma taimaka wa tawagar mu fahimci wane ɓangaren shafin yanar gizon da kuka samu mafi ban sha'awa da amfani.
Haɗin gwiwar NHS England: Fahimtar bayanan mara lafiyar EB da aka gudanar a cikin NHS
wannan aikin zai gano gaskiya da adadi game da EB da za a iya amfani da su don wayar da kan jama'a da inganta magani.
Dr Zoe Veniyawa (hagu) da kuma Marta Kwiatkowska (dama) aikin at NHS Ingila a kan wannan aikin to fahimta ƙarin game da yadda mutanen da ke zaune tare da EB ke samun sabis na NHS. Bayanan likita na alƙawura, jiyya, tiyata kuma ana adana takardun magani amintacce a cikin ma'ajin bayanai da yawa. Thaɗin gwiwarsa zai haifar da ƙarin ilimi game da abubuwan da NHS ke ciki na mutanen da ke zaune tare da EB don haka su, su likitoci da kuma masu bincike cda ƙarin sani game da gaskiya da adadi da EB.
Kara karantawa a cikin shafin mai binciken mu.
Game da kudaden mu
| Jagoran Bincike | Dr Zoe Venables / Ms Marta Kwiatkowska |
| Institution | NHS England |
| Nau'in EB | Duk nau'ikan EB |
| Hanyar haƙuri | Babu |
| Adadin kuɗi | Partnership |
| Tsawon aikin | Partnership |
| Fara kwanan wata | 2nd Janairu 2024 |
| DEBRA ID na ciki | GR000087 |
Bayanan aikin
Ms Kwiatkowska ta gabatar da sabuntawa kan aikin a karshen mako na Membobi 2024.
Dr Zoe Venables Mataimakin Farfesa ne na Clinical kuma mai ba da shawara kan cututtukan fata a Norfolk da Asibitin Jami'ar Norwich da Jami'ar Gabashin Anglia. Ita ce Clinical Clinical tana haifar da rajista na Cancer na Ilimin Kasa da Bincike.
Marta Kwiatkowska babban manazarcin bayanai ne da ke aiki tare tare da NHS Ingila da DEBRA UK don ƙarin fahimtar yadda mutanen da ke zaune tare da EB ke samun sabis na NHS. Ta karɓi MSc ɗinta daga Kwalejin Imperial ta London a cikin Nazarin Bayanan Lafiya.
A baya ta yi aiki a Kiwon Lafiyar Jama'a ta Ingila tana nazarin bayanan cutar kansar fata, don ƙungiyar likitocin fata ta Burtaniya (BAD) da kuma masana'antar harhada magunguna.
"Muna farin cikin yin aiki kafada da kafada da DEBRA don tallafawa al'ummar bullosa epidermolysis. Wannan aikin mai ban sha'awa zai inganta tarin da kuma nazarin bayanan kiwon lafiya na yau da kullum don samar da hankali wanda ke tallafawa marasa lafiya da iyalansu tare da wannan yanayin, da kuma likitoci da masu bincike. Yin aiki tare da haɗin gwiwar DEBRA zai ba mu damar amsa tambayoyi masu mahimmanci ga al'ummar EB da kuma taimakawa wajen tsara dabarun bincike na gaba."
- Dr Steven Hardy, Shugaban Genomics da Rare Cututtuka don Sabis na Rijistar Cututtuka na Kasa a NHS Ingila
Sunan ba da kyauta: NHS Ingila / DEBRA UK haɗin gwiwa
Manufar wannan muhimmin sabon shiri shine don ƙara fahimtar EB, ƙungiyar da ba kasafai ba, mai raɗaɗi, yanayin fata na kwayoyin halitta, wanda ke sa fata ta yi tari da tsage ko kaɗan.
Ta hanyar nazarin bayanai DEBRA na nufin amfani da sakamakon don taimakawa wajen wayar da kan jama'a game da EB ta hanyar samar da cikakkun bayanai da ƙididdiga ga GPs, marasa lafiya da su. kula, gwamnati, da jama'a, bayanan da za a iya amfani da su don taimakawa wajen samun tallafi. Bayanan da aka rubuta za su ba da damar fahimtar mita, yanayi, haddasawa da sakamakon nau'o'in EB da aka gada wanda zai taimaka wa masu bincike da masana'antun magunguna da ke aiki a kan hanyar, rigakafi, ganewar asali, magani, da kuma kula da alamun EB, zuwa inganta kulawar haƙuri da sakamako.
Dwata 2025.