Ua hoʻolaha ʻo Emmes i kēia lā ua paʻi ʻia ka noiʻi a Casimir e pili ana i ka hoʻomohala ʻana i ka Duchenne Video Assessment (DVA) scorecards ma PLOS ONE. Ua loaʻa ʻo Emmes iā Casimir i Malaki 2022, a ʻo ka hui i kēia manawa he ʻāpana o Emmes 'Rare Disease Center, Orphan Reach™.
ʻO ka DVA kahi moʻolelo noʻonoʻo, home-based clinical outcome assessment e ana i ka maʻalahi o ka neʻe ʻana i waena o ka poʻe me Duchenne muscular dystrophy (DMD) ma o ka ʻike ʻana i nā ʻano neʻe uku. Hoʻopaʻa wikiō nā mea mālama i nā mea maʻi e hana ana i nā hana hoʻoneʻe kikoʻī ma ka home me ka hoʻohana ʻana i kahi polokalamu kelepona paʻa. Hōʻike ka pepa i ka hoʻomohala ʻana o nā scorecards i hoʻohana ʻia e nā mea lapaʻau kino i aʻo ʻia e DVA e kiʻi i nā wikiō.
ʻO Marielle Contesse o Casimir, ka mea ʻepekema noiʻi, ʻo ia ka mea kākau alakaʻi, me Mindy Leffler, ka mea hoʻokumu a me ka pelekikena, a me Christine McSherry, ka mea hoʻokumu a me ka luna hoʻokō nui, i waena o nā mea kākau ʻē aʻe.
ʻO kahi pepa mua ma Muscle & Nerve, i kākau ʻia e Contesse, Leffler a me nā mea noiʻi Casimir ʻē aʻe, i hōʻike i nā ʻike noiʻi e hōʻike ana he mea hilinaʻi a kūpono ka DVA no ke ana ʻana i ka maʻalahi o ka neʻe ʻana ma ke ʻano he hōʻailona o ka nui o ka maʻi i nā maʻi me DMD. Hōʻike ka pepa hou loa ma PLOS ONE i ka hoʻomohala ʻana o nā kāleka helu DVA.
Hōʻike ka pepa PLOS ONE i ka noiʻi hoʻomohala scorecard i hana ʻia me nā mea lapaʻau kino i loaʻa ka ʻike nui i ka loiloi ʻana i nā maʻi me DMD. Ua hoʻohana ka poʻe noiʻi i kahi kaʻina Delphi i hoʻololi ʻia ʻelua e hōʻiliʻili i nā manaʻo loea ma nā scorecards. I loko o ke kaʻina hana Delphi, ua loiloi nā mea lapaʻau kino i nā scorecards no nā hana neʻe he 15 a pau. ʻO nā hana o ka neʻe ʻana he mau hana maʻamau e hana ʻia e nā maʻi ma ka home, e like me ka hele wāwae, ka piʻi ʻana i ke alapiʻi, ke kau ʻana i ka pālule, a me ka ʻai ʻana. Ma hope o ʻelua pōʻai o ka loiloi a me ka hoʻoponopono hou ʻana, ua hōʻoia ka papa loea i ka hoʻomaopopo ʻana i nā koina neʻe ʻana i ka uku i hoʻokomo ʻia i loko o nā scorecards DVA he maopopo, piha, a me ke ʻano o ke kino.
"Hāʻawi ka DVA i ka puka makani i ke ʻano o ka neʻe ʻana a me ka hana ʻana o nā poʻe maʻi me Duchenne i ko lākou home home," wahi a Marielle Contesse, "a ʻo kā mākou scorecards e hāʻawi i kahi ala maʻamau no nā mea lapaʻau kino e ʻike ai i nā ʻano hoʻoneʻe uku. ʻO ka hoʻonohonoho ma ka home hiki iā mākou ke loiloi i kahi ākea ākea o nā neʻe i kēlā me kēia lā. Hoʻopau pū ia i ka pono o nā maʻi a me nā ʻohana e hele lōʻihi i nā kahua hoʻokolohua lapaʻau.
Ua hoʻohui ʻo ia, "ʻO ka hope loa, ke manaʻo nei mākou e hiki i ka DVA ke ʻike i nā loli o ka hana maʻi i kahi manawa pōkole ma mua o nā ana hopena. Hiki i kēia ke hōʻemi i ka manawa e hoʻohana ai nā mea maʻi i ke komo ʻana i kahi hoʻokolohua lapaʻau. "
Ua ʻōlelo ʻo Emmes Luna Nui ʻo Dr. Christine Dingivan, "ʻO kēia noiʻi ke kumu no ka hoʻohana ʻana i kā Casimir's Duchenne Video Assessment e hoʻonui i nā manawa no ka ʻike ʻana i ka piʻi ʻana o ka maʻi a me nā koho lapaʻau. Paipai ʻia mākou e ka hoʻohana ʻana i ka DVA e loiloi i nā maʻi muscular a me ka mitochondrial.
