Maganin Cannabinoid don duk EB zafi da ƙaiƙayi

A cikin Nuwamba 2023, masu bincike sun ba da rahoton cewa har yanzu suna daukar ma'aikata don binciken asibiti. Suna buƙatar aƙalla mutane takwas su shiga domin sakamakon ya kasance mai ma'ana. A cikin mutane bakwai da suka shiga ya zuwa yanzu, fiye da rabin sun kammala binciken. Suna tsammanin yin rajistar mutum na takwas a farkon 2024 kuma za su bincika sakamakon da zarar duk mutane takwas sun kammala binciken.

A cikin Afrilu 2023, masu bincike sun ba da rahoton cewa ɗaukar marasa lafiya don wannan binciken ya fara ne a cikin Maris 2022 amma mutane kaɗan sun dace fiye da yadda ake tsammani saboda binciken MRI da aka shirya. Sun canza shirin su don haka mutanen da ba za su iya yin gwajin MRI ba su iya shiga cikin binciken. Ana sa ran marasa lafiya bakwai za su kammala binciken a ƙarshen Agusta 2023.

Masu bincike sun buga ka'idojin gwaji na asibiti a cikin Disamba 2022 kuma ya sami amsoshi da yawa. Suna ba da shawarar buga irin wannan rubutun ga sauran ƙungiyoyin bincike a cikin filin EB.

Cibiyar ta raba sabuntawa a cikin Maris 2022:

UMCG ta fara bincike game da tasirin man cannabis na magani a cikin marasa lafiya na EB

Farfesa Dr André Wolff shi ne shugaban UMCG Pain Center, kujeru UMCG Pelvic Pain Center kuma yana da sha'awa ta musamman ga sababbin (likita) na ciwo mai tsanani da ke da alaka da kulawa da haƙuri. Ayyukansa ya shafi ainihin ganewar asali na ciwo ta hanyoyi masu banƙyama a cikin marasa lafiya na ciwo mai tsanani da kuma gano ciwon neuropathic. Yana kuma aiki a fagen kimiyyar aiwatarwa da ingancin kulawa.

Dr Marieke Bolling, MD, PhD, ƙwararren likitan fata ne wanda ya ƙware a EB da sauran cututtukan fata da aka gada kuma shine mai kula da lafiya na ƙungiyar EB multidisciplinary a Cibiyar Cututtukan Blisting a Cibiyar Kiwon Lafiya ta Jami'ar Groningen. Ta yi nasarar kare karatun digirinta a cikin 2010 mai taken: Epidermolysis Bullosa Simplex. Kwarewar bincikenta da sa ido za su kasance masu mahimmanci ga ingantaccen tsari, aiwatarwa da kuma kammala wannan aikin.

Dokta José Duipmans, An ƙaddamar da haɓakar kulawa ta hanyar sadarwa ta yau da kullum tare da marasa lafiya da kuma reshen DEBRA NL na gida. Yawancin lokacinta an mayar da hankali kan fahimtar bukatun haƙuri, tsammanin iyali da fahimtar manyan matsalolin da yaran da ke zaune tare da EB suka fahimta. José zai shiga cikin kayan aiki na masu haƙuri na wannan binciken kuma ya ba da muhimmiyar ma'anar tuntuɓar a duk lokacin binciken.

Nicholas Schräder, BSc, yana aiki tare da EB tun daga 2010 kuma ya ɗauki matsayi mai mahimmanci a cikin shirye-shiryen ilimi da suka shafi EB da nazarin ciki har da kwarewa a Jami'ar Sinanci na Hong Kong Prince of Wales Hospital, EB Research Center University of Freiburg Medical Center, Great Ormond Street. Asibitin Yara da Cibiyar Kiwon Lafiya ta Jami'ar Groningen. Tun daga 2012, Nicholas ya shiga cikin bincike na kimiyya don EB a karkashin jagorancin Farfesa Marcel Jonkman, tare da kulawa na musamman ga alamun bayyanar cututtuka da ingancin rayuwa. Haɗu da ƙididdiga marasa ƙima na maganin cannabis-amfani don tarin matsalolin da ke da alaƙa da EB, da aiki a cikin tsarin kiwon lafiya na Dutch tare da kafa cibiyar EB-da yawa, ya sami damar ƙarin bincika yiwuwar tasirin cannabis na likita, ko cannabinoids, ga mutane. fama da EB.

Dr Marcel Jonkman ya rasu a watan Janairu, 2019. Ya shahara saboda sabbin hanyoyinsa na binciken kimiyya da ilimi na EB. Ayyukansa da jagorancinsa sun haifar da fahimtar zurfin fahimtar nau'o'in nau'o'in nau'o'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'in nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i nau'i).

"Labarai, labarun da tambayoyi daga marasa lafiya sun kasance masu mahimmanci ga fahimtarmu a halin yanzu game da jurewar magungunan cannabinoid da aka yi amfani da su don alamun EB… rayuwar majinyatan mu da suka sha wahala."

Sunayen Kyauta:

Tabbatar da ingancin mai tushen sublingual phyto-cannabinoid don maganin ciwo da raɗaɗi (itch) a cikin epidermolysis bullosa.

Binciken bincike mai yiwuwa mai sarrafawa akan cannabinoids don magance ciwo na kullum a cikin epidermolysis bullosa.

Transvamix (10% THC / 5% CBD) don kula da ciwo na kullum a cikin epidermolysis bullosa: Wani bincike na bazuwar, mai sarrafa wuribo da kuma binciken tsaka-tsakin makafi sau biyu.

Mutanen da ke da epidermolysis bullosa (EB) suna fuskantar akai-akai, alamu masu rauni, kamar zafi da ƙaiƙayi. Rahotanni na anecdotal daga marasa lafiya na EB sun ba da shawarar cewa magungunan cannabinoid na tushen (CBMs) suna da tasiri don sarrafa alamun.

Kowane mutum yana da tsarin endocannabinoid na kwayoyin halitta da masu karɓa wanda ke taka rawa a cikin ayyuka daban-daban na jiki, ciki har da alamar ciwo da ƙaiƙayi - sa kwakwalwa ta san waɗannan alamun.

Shaida don yawancin cututtuka masu raɗaɗi da ƙaiƙayi, da kuma abubuwan haƙuri na EB, suna ba da shawarar cewa CBMs, waɗanda aka samar a waje na jiki (kamar shukar Cannabis) sun kai matakan kwatankwacin alamun taimako ga magunguna na yau da kullun. Sau da yawa ana amfani da magani fiye da ɗaya don manufa ɗaya (misali don ciwo, opiates & anti-inflammatory ana amfani da su) wanda zai iya haifar da lahani maras so ko mara amfani. Rahotanni na kwanan nan daga marasa lafiya tare da EB a duk faɗin duniya, dalla-dalla abubuwan da suka samu tare da CBMs, duka wajabta da kuma samun kansu, sun kasance da yawa, kuma suna kira ga binciken kimiyya don tantance aminci da tasiri na CBMs. Ana samun CBMs a cikin ƙasashe masu tasowa, gami da Netherlands, duk da haka EB takamaiman ilimi da jagororin sun rasa.
Sabili da haka, a cikin binciken wannan yuwuwar magani, wannan aikin yana da nufin samun fahimta game da ko zai iya inganta yanayin rayuwa a cikin marasa lafiya tare da EB.

A duniya baki daya, masu bincike a halin yanzu suna duba nau'ikan tsarin CBM da nau'ikan gudanarwa don cututtuka da yawa. A cikin Netherlands, ci gaban da aka samu kwanan nan ya haifar da daidaiton tsire-tsire na cannabis don amfani da lafiyar marasa lafiya na Dutch. Game da zaɓin CBM don wannan binciken, waɗannan "phytocannabinoids" (cannabinoid na tushen shuka) ana fitar da su daga tsire-tsire kuma an haɗa su cikin mai wanda aka gudanar azaman digo a ƙarƙashin harshe (sublingually). Samfurin ƙarshe shine mai siyar da magunguna - darajar CBM, kuma a halin yanzu ana rarrabawa ga marasa lafiya a cikin Netherlands waɗanda suka sami takardar sayan magani daga likitan da suka yi rajista.

Amfani da CBMs na tushen tsire-tsire ba jaraba ta jiki bane, kuma ba a haɗa shi da barazanar rayuwa ko rikitarwa masu rauni ba. Kamar yadda a halin yanzu babu isasshen bayani game da tasirin cannabinoid na dogon lokaci akan tsarin juyayi masu tasowa a cikin yara, wannan binciken kawai ga marasa lafiya sama da shekaru 18 ne. Ƙa'idodin haɗawa da ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙayyadaddun ƙa'idodi za su yi la'akari da yanayin tabin hankali kamar yadda amfani da CBM zai iya shafar waɗannan.

Binciken zai bincika idan ƙarin magani tare da wannan man fetur na sublingual zai iya inganta rayuwar manya tare da EB masu fama da ciwo da / ko ƙaiƙayi. Sakamakon man CBM na iya ɗaukar sa'o'i 4-8 don haka ana buƙatar ɗaukar sau 4 kowace rana don kula da matakan jini. Marasa lafiya za su ba da rahoton zafi, ƙaiƙayi da canje-canje a cikin ingancin rayuwarsu kowane wata sama da watanni 6. Za a auna ingancin rayuwa, zafi da ƙaiƙayi ta hanyar yin amfani da tambayoyin haƙuri ko ma'aunin sakamako da aka ruwaito. Za a yi amfani da adadin waɗannan don gano ma'auni mafi mahimmanci ga canje-canje a cikin marasa lafiya tare da EB.
Ba a buƙatar dakatar da magani na yanzu a matsayin ɗan takara na nazari, a yayin gudanar da bincike, ƙungiyar bincike za ta kula da canjin magani-amfani da kowane majiyyaci (kamar raguwar amfani da opiate), kuma a ƙarshe bincika ko wannan ya dace. tare da amfani da mai na CBM.

An yi la'akari da wannan binciken a matsayin mai yiwuwa, buɗaɗɗen lakabi, hujja na nazarin ra'ayi - gwada sabon magani a cikin ƙananan marasa lafiya, inda kowa da kowa ya ɗauki sabon magani don ganin irin amfanin da za a iya gano. Sabili da haka, a cikin binciken wannan yuwuwar magani, wannan aikin yana da nufin samun fahimta game da ko zai iya inganta yanayin rayuwa a cikin marasa lafiya tare da EB.

Kyawawan gogewa da likitoci da marasa lafiya tare da EB suka raba tare da cannabinoids da aka yi amfani da su azaman magungunan warkewa, sun ba da gudummawa sosai ga fahimtarmu. Wannan binciken zai fara aiwatar da nazarin ilimin kimiyya da waɗannan ƙa'idodi kuma yayi aiki zuwa ka'idar magani da jagororin tushen shaida waɗanda zasu iya canza yanayin rayuwar marasa lafiya na EB. Kamar yadda wannan binciken ya ƙunshi amfani da man CBM da aka sarrafa a cikin sublingually, sakamakon da ƙarshe za su kasance masu dacewa da wannan tsari da tsarin gudanarwa na CBM, kamar yadda sauran nau'o'in tsari da tsarin gudanarwa na jikin ɗan adam ke sarrafa su ta hanyoyi daban-daban.

Binciken bincike mai yiwuwa mai sarrafawa akan cannabinoids don magance ciwo na kullum a cikin epidermolysis bullosa.

Transvamix (10% THC / 5% CBD) don kula da ciwo na kullum a cikin epidermolysis bullosa: Wani bincike na bazuwar, mai sarrafa wuribo da kuma binciken tsaka-tsakin makafi sau biyu.

An kammala aikin shirye-shirye da ka'idoji don gwaji na asibiti. Baya ga amincewar ɗabi'a, an saita dabaru don haɗin gwiwar magunguna, hoton rediyo da fom ɗin rahoton rahoton kan layi (babban bayanai) kuma an yarda dasu. Tun daga 15-03-2022 an fara daukar ma'aikata don shiga. Tsawon lokacin haɗawa shine watanni 6. Rufewar da ake tsammanin ya biyo baya ta hanyar nazarin bayanai shine Q4 2022.

Ƙungiyar binciken ta ci karo da jinkiri mai mahimmanci saboda tsarin tantance da'a. Wannan ya haifar da sake fasalin tsarin gwaji na asibiti yana inganta inganci da ƙarfin binciken - tare da ƙayyadaddun ƙayyadaddun ma'auni na bayanai (fMRI-amfani, sarrafa placebo, ƙirar giciye). Bugu da kari, duk batutuwan da suka shafi cutar ta COVID, da ka'idojin da suka biyo baya, sun ba da ƙarin jinkiri. Kamar yadda aka ambata a sama, sauye-sauyen hanyoyin suna rage nauyin shiga, kuma suna ba da damar tattarawa mai ƙarfi da nazarin sakamako. Tun lokacin da aka amince da fara ayyukan bincike, hankalin kafofin watsa labaru ya karu, DEBRA-UK ana lura da su azaman masu rarraba tallafi. (Daga rahoton ci gaba na 2022).