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Asibitin Aikace-aikacen mu na farko - haɓaka bincike ta hanyar haɗa mutanen da EB ya shafa

Bincike kan magance alamun EB zai inganta rayuwa, amma ta yaya masu bincike suka yanke shawarar wane alamun ko magunguna za su yi nazari? Ta yaya za mu san abin da mutanen da ke zaune tare da EB suke so mu kashe kudaden mu masu daraja wajen bincike? Ƙari da ƙari, muna ƙoƙarin shigar da membobinmu wajen jagorantar jagorancin binciken EB kuma mun yarda cewa "... yana da matukar muhimmanci ga marasa lafiya, don yin taro tare da masu bincike,” kamar yadda daya daga cikin masu halartar Asibitin Aikace-aikacen ya ce.

Bayanan bayanan da ke nuna fa'idodin shigar da mutane tare da EB a cikin bincike: jin muryoyinsu, tsarawa tare, gudanar da bincike a matsayin ƙungiya, da raba sakamako a ko'ina.

Sama da dozin DEBRA na Burtaniya sun haɗu da masu bincike huɗu a cikin taron mu na kan layi wanda ya kasance "babban himma" kuma a "... Kyakkyawan dama don fita daga kumfa na lab da kuma sadarwa tare da mutane na gaske." 

Daya daga cikin mahalarta taron ya bayyana shi da…

"Kwarewa mai ban sha'awa wanda ya ba wa 'yan kasa damar yin tambaya, ba da sharhi da fahimta da godiya ga masu binciken."

Membobin sun sami damar tambayar masu bincike game da aikinsu kuma su sami ƙarin cikakkun bayanai game da abin da ke cikin bututun bincike na EB. 

"Na same shi hanya ce mai kyau don fahimtar ayyukan biyu kuma in ba mai binciken ra'ayi mai mahimmanci wanda zai taimaka lokacin da suka zo gabatar da aikin su don samun kudade. Ina kuma tsammanin hanya ce mai kyau don ganin ko ayyukan za su taimaka wa mutanen da ke rayuwa tare da EB kowace rana. "

Masu bincike sun sami ra'ayi daga membobin game da shawarwarin da suka bayar kuma sun sanar da mu cewa za a sami gyare-gyare ga tsara ayyukan su, da kuma yadda suke bayyana aikin su saboda wannan. 

"Na sami ra'ayi mai mahimmanci akan abubuwa da yawa masu mahimmanci na aikina. Misali, na gano hanya mafi dacewa don isar da magungunana ga marasa lafiya. "

Asibitin Aikace-aikacen ya kasance…

"Kyakkyawan hanya don shiga da samun ra'ayi, Ina daraja shi sosai kuma na yi imani yana taimaka mana inganta ayyukanmu."

Ƙayyadaddun lokaci don neman tallafin binciken mu na 2024 a ƙarshen Maris yana nufin masu bincike suna da lokaci don ɗaukar ra'ayoyin mambobin mu a Asibitin Aikace-aikacen kafin gabatar da shawarwarin su. Fatanmu shine ta hanyar shigar da membobi a matakin ƙira, binciken da muke bayarwa zai kasance da sauƙi ga membobinmu su fahimta da sake dubawa; za a tsara shi tare da al'ummar EB a zuciya, kuma a ƙarshe ya samar da sakamakon da ya fi dacewa da membobinmu. 

Wani mai bincike ya ce…

 "Na sami amsa daga DEBRA UK a mafi mahimmanci lokaci a cikin tsarin rubutun tallafi."

A watan Afrilu, membobinmu suna da damar da za su taimaka mana yanke shawarar irin binciken da muke bayarwa ta hanyar yin bitar kowane ko duk aikace-aikacen da aka ƙaddamar don tallafin binciken mu. Wannan yana ɗaukar kusan mintuna 15 a kowace aikace-aikacen, kuma a bara, waɗannan maki da sharhi sun inganta tsarin bayar da kyaututtukanmu. Ba kwa buƙatar samun kowane ilimin kimiyya don shiga cikin yin bitar aikace-aikace a matsayin memba na DEBRA. Kasancewa da EB ya shafa kai tsaye yana haifar da ƙwarewa ta hanyar ƙwarewa wanda ke ba da damar fahimtar ku da ra'ayoyin ku masu mahimmanci ga tsarin bayar da lambar yabo ta bincikenmu da kuma a Asibitin Aikace-aikacen.

 

Me zai hana ku shiga wannan shekara don taimaka mana yanke shawarar abin da binciken EB zai bayar?

 

Taimaka mana yanke shawarar irin binciken da muke bayarwa

 

Mambobi ne na Ƙungiyar Bincike na DEBRA UK suka gudanar da Asibitin Aikace-aikacen da suka ci gaba da gudanar da taron zuwa lokaci, amma tattaunawar ta tafi daidai har zuwa minti na ƙarshe kuma ya bar masu halarta da yawa suna son ƙarin. Godiya ga duk masu bincike da membobin DEBRA da suka halarta don yin shi a "... gwaninta mai lada sosai" da kuma "kwarin gwiwa ga duk binciken kimiyya na gaba"

Da fatan za a sake dawowa shekara mai zuwa!