DEBRA tana haɗin gwiwa tare da NHS Ingila don ƙarin fahimtar epidermolysis bullosa (EB)

DEBRA, ƙungiyar bayar da agaji ta likita ta ƙasa ta Burtaniya da ƙungiyar tallafin haƙuri ga mutanen da ke zaune tare EB, Ya ƙaddamar da haɗin gwiwa tare da NHS Ingila tare da ƙaddamar da wani sabon yunƙuri da ke aiki tare da Sabis ɗin Rijistar Cututtuka na Ƙasa don nazarin da kuma nazarin bayanan kiwon lafiya daga marasa lafiya da ke zaune tare da kowane nau'in EB.

Manufar wannan muhimmin sabon shiri shine don ƙara fahimtar juna EB, ƙungiyar da ba kasafai ba, mai tsananin raɗaɗi, yanayin fata na kwayoyin halitta, waɗanda ke sa fata ta yi kumbura da yage a ɗan taɓawa.

A matsayin wani ɓangare na wannan sabon binciken, DEBRA yana da ya dauki wani kwararren Babban Manazarcin Bayanai wanda zai yi aiki tare da NHS Ingila don nazarin bayanan haƙuri na EB daga bayanan NHS don neman ƙarin bayani game da gaskiya da ƙididdiga na EB, da kuma yadda NHS ke ba da kiwon lafiya a halin yanzu ga mutanen da ke zaune tare da kowane nau'in EB. Ana fatan cewa mafi kyawun samun dama da fahimtar bayanan haƙuri na EB zai taimaka wajen amsa tambayoyin bincike mafi mahimmanci ga al'ummar EB.

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 masu kula da su, 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.

Da yake tsokaci kan wannan muhimmin sabon haɗin gwiwa, Daraktan Bincike na DEBRA, Dokta Sagair Hussain ya ce:

"Mun yi farin cikin fadada dangantakarmu da NHS Ingila. Mun riga mun yi aiki tare da haɗin gwiwa don isar da ƙwararrun sabis na kiwon lafiya na EB ta hanyar cibiyoyin kiwon lafiya na EB masu kyau, kuma yanzu tare da wannan sabon haɗin gwiwar za mu sami mafi kyawun damar samun ingantaccen bayani game da kulawa da sakamako ga marasa lafiya na EB wanda zai kasance mai amfani gare mu, yana taimakawa. ƙara fahimtar yanayin, haɓaka shari'ar mu don tallafi, da kuma taimaka mana ayyana mahimman abubuwan bincike na EB don tabbatar da dabarun bincikenmu ya cika daidai da bukatun al'ummar EB. "   

Da yake tsokaci game da wannan muhimmin sabon haɗin gwiwa, Dokta Steven Hardy, Shugaban Genomics da Rare Cututtuka na Sabis na Rijistar Cututtuka na Ƙasa a NHS England, ya ce:

"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."

Nemi ƙarin game da Hukumar Rijistar Cututtuka ta Kasa.