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Werohanga Konutai Nusinersen: Te Tūmanako mō te Ngaronga o ngā Uaua Tuaiwi
Te Āhua o tana Mahi
Nusinersen KonutaiHe rongoā antisense oligonucleotide (ASO) e aro ana ki te ira SMN2.
Mā te whakarerekē i tana tukanga honohono, ka whakanui ake i te whakaputanga o ngā mea mahi Pūmua SMN, he mea nui mō te oranga me te mahi a ngā neuron motuka.
Ka tukuna tika te rongoā ki roto i te wai cerebrospinal mā te poka lumbar, kia tino tae atu ai ki ngā wāhi e pāngia ana.
Ngā Painga Hauora
Momo SMA I:
- Ka whakapiki ake i ngā reiti oranga mō ngā tau e rua mai i te 50% ki te neke atu i te 80%.
- Ka whakarei ake i ngā mahi nekeneke pēnei i te noho takitahi me te whakahaere i te mahunga.
- Ka whakaiti i te whakawhirinaki ki ngā mīhini whakaea manawa.
SMA Momo II me te III:
- Ka whakaroa i te whanaketanga o te mate.
- Ka pupuri, ka whakapai ake rānei i te nekenekehanga o ngā peka me te mahi manawa.
- Mā te maimoatanga i mua i te puta o ngā tohumate (hei tauira, i ngā pēpi hou) ka tata te whanaketanga o te tinana ki te noho noa.
Pānga mō te Wā Roa:
- E whakaatu ana ngā raraunga aroturukitanga e rima tau te pikinga pumau o te mahi nekeneke, ā, kāore he hekenga nui.
Whānuitanga o te Ao:
- Mai i te whakaaetanga a te FDA i te tau 2016, neke atu i te 100,000 ngā tūroro puta noa i te 60+ whenua kua whai hua, e kapi ana i ngā momo SMA katoa.
Ngā Taunakitanga mai i te Rangahau
Ngā whakamātautau haumanu (hei tauira, EMBRACE, ENDEAR, CHERISH) e whai wāhi ana 274 ngā tūroro whakaatu ngā whakapainga nui:
- Te urupare mō ngā tohu matua o te motuka: 51% te pai ake i ngā rōpū whakahaere (p
- Te whakapai ake i te kaute HINE-2: 26% te pai ake i ngā mana whakahaere (p
I whakaatuhia hoki e ngā rangahau i roto i ngā taiohi me ngā pakeke he pai ake ngā kaute mahi nekeneke (hei tauira, HFMSE, RULM) i muri i te 26 marama.
Te utu i BIOOCUS
ahauHuringa Maimoatanga Tuatahi (4 Werohanga): $200,000 te mōkihi whānui, tae atu ki:
- Te utu rongoā: $50,000 mō ia werohanga.
- Ngā utu mō te werohanga, te wāhanga tiaki tamariki, me te whakamātautau.
- Ngā ratonga kawe waka rererangi me ngā ratonga mekameka matao.
I muri i te MaimoatangaKa taea e ngā tūroro te tango i te horopeta tuawhā ki te kāinga i roto i te pouaka mekameka makariri 2-8°C, ā, ka whiwhi tautoko mō ngā horopeta tiaki i ia 4 marama.
ahauWhakataurite Utu o te Ao
| Whenua/Rohe | Te utu mō ia werohanga (USD) | Tapeke mō ngā Horomanga Utaina e 4 (USD) | Te Utu o te Tau Tuatahi (USD) | Ngā Tuhipoka |
| BIOOCUS, Haina | 50,000 | 200,000 | 200,000 (tīmatanga) | Kei roto ngā ratonga katoa |
| Te Hononga o Amerika | 125,000 | 500,000 | 750,000 (6 werohanga) | Kāore he tautoko |
| Ahitereiria | 87,500 (Kāore he tahua āwhina) | 350,000 | 525,000 (6 werohanga) | PBS Tautoko
|
Ngā PenapenaKa tukuna e ngā utu a BIOOCUS te whakahekenga utu tae atu ki te 60% ki te whakataurite ki ngā utu kāore i tautokona i te US me Ahitereiria.
Te Manaaki Whānui mō ngā Tūroro o te Ao
Ka tautoko pai mātou i ngā tūroro o tāwāhi e rapu maimoatanga ana i Haina, kia pai ai te haere o te wheako.
I mua i te Maimoatanga
- Whakawhitiwhiti Kōrero HauoraNgā mahere maimoatanga whaiaro i runga i ngā pūkete a te tūroro.
- Te Rōpū TohungaTātaritanga maha-mātauranga mō te tika.
- Ngā mahi whakahaereĀwhina visa, whakaritenga moni tāpui, me ngā whakaritenga rerenga.
I te wā o te maimoatanga
- Wāhi Noho me te HaereereKua whakaritea ngā nohoanga hōtēra me ngā whakawhiti ki te taunga rererangi.
- Te Tiaki HauoraTe maimoatanga i te Pokapū Whakahaere Hauora Hauora Karihi o Haina, e whakaatu ana i ngā hangarau matatau me ngā kaimahi pūkenga.
- Kaupapa WerohangaKa tukuna i ngā rā 1, 14, me te 28, me te tirotiro i muri i te 6 hāora i te werohanga hei tirotiro i te haumaru.
I muri i te Maimoatanga
- Horomanga Tangohia-KāingaKo te werohanga tuawhā i tukuna i roto i te pouaka mekameka makariri.
- Tautoko TonuĀwhina mō ngā horopeta tiaki i ia 4 marama, tae atu ki te hoko me te tuku.
Ngā Ratonga Tāpiri
- Whakawhitiwhiti kōreroKua whakaritea a WhatsApp me WeChat mō te whakapā atu ngāwari.
- Urunga VIPNgā ratonga hauora tere-ara mā roto i ngā tīma motuhake.
- Ngā Hiahia o ia RāTautoko mō te wāhi noho, te kawe waka, te kai, te hokohoko, me te whakamāori ngaio.
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