Nazarin Haɗin gwiwar Saitin fifiko na EB

Shin har yanzu kuna da tambayoyin da ba a amsa ba game da EB? Ko ka taba samun amsa ga tambayarka game da EB wanda ba a amsa cikakke ba?

Ba kai kaɗai ba. Sama da mutane ɗari 800, waɗanda ke zaune tare da EB, suna kula da wanda ke da EB, ko waɗanda ke aiki tare da waɗanda EB ta shafa, sun gaya mana manyan tambayoyin 10 waɗanda ba a amsa ba game da EB. Ƙungiyar EB ta duniya kwanan nan ta shiga cikin tarurrukan kan layi don taimaka mana tabbatar da matsayi na manyan tambayoyi 10 na ƙarshe. Waɗannan tambayoyin za su zama dabarun bincike na DEBRA na shekaru masu zuwa kuma za su yi tasiri kan binciken EB a duniya.

Kuma za mu iya yanzu raba sakamakon tare da ku.

Game da aikin

DEBRA (Birtaniya) ta jagoranci wannan aikin tare da James Lind Alliance saboda mun yi imanin cewa ya kamata al'ummar EB su tsara dabarun binciken mu. Dabarun bincike galibi suna jagorantar bukatun masana da masu bincike. Amma muna son dabarun binciken mu ya kasance ta hanyar ku - mutanen da ke zaune tare da EB, ko kula da ƙaunatattuna kowace rana, da ƙwararrun da ke goyan bayan ku.

Mun yi haɗin gwiwa tare da Cure EB, DEBRA Ireland, DEBRA Canada, DEBRA International, da EB Research Partnership don wannan aikin, kuma tare mun kafa wata ƙungiya. Haɗin gwiwar Saitin fifiko na EB wanda ya haɗa da marasa lafiya da masu kula da EB ya shafa, da ƙwararrun kiwon lafiya.

Duba ka'idar

Sakamakon yana cikin

Wannan aikin shigar yanzu ya ƙare, kuma yanzu mun bayyana manyan abubuwan bincike guda 10 na kowane nau'in EB. Al'ummar EB ta duniya sun amsa bincikenmu na farko (sama da martani 600) a lokacin rani, da bincikenmu na biyu ( sama da martani 800) a cikin Nuwamba 2024, kuma sun gaya mana manyan tambayoyinsu 10 da ba a amsa ba game da EB. Kwamitin gudanarwarmu ya bincika waɗannan ɗaruruwan tambayoyi, kuma waɗannan abubuwan da suka fi dacewa an tattauna su kuma an tsara su ta al'ummar EB ta duniya (waɗanda EB ta shafa kai tsaye, masu kulawa, da ƙwararrun kiwon lafiya).

Za ka iya karanta cikakken rahoton sakamakon da aikin anan da kuma neman karin bayani a kasa.