{"id":11605,"date":"2023-02-28T11:32:51","date_gmt":"2023-02-28T02:32:51","guid":{"rendered":"https:\/\/clarivate.com\/ko\/?p=11605"},"modified":"2024-11-06T02:57:11","modified_gmt":"2024-11-06T02:57:11","slug":"understanding-a-rare-disease-through-the-lens-of-real-world-and-prevalence-data","status":"publish","type":"post","link":"https:\/\/clarivate.com\/life-sciences-healthcare\/ko\/blog\/understanding-a-rare-disease-through-the-lens-of-real-world-and-prevalence-data\/","title":{"rendered":"Real World Data \ubc0f \uc720\ubcd1\ub960 \ub370\uc774\ud130\ub97c \ud1b5\ud574 \ubcf8 \ud76c\uadc0\ubcd1\uc5d0 \ub300\ud55c \uc774\ud574"},"content":{"rendered":"

<\/strong><\/p>\n

SHYAMA GHOSH<\/p>\n

\uc218\uc11d \ucf58\ud150\uce20 \ud3b8\uc9d1\uc790<\/p>\n

\ud074\ub798\ub9ac\ubca0\uc774\ud2b8<\/p>\n

 <\/p>\n

\ub808\ubc84\uc528<\/strong> \uc2dc\uc2e0\uacbd<\/strong> \uc704\ucd95\uc99d<\/strong>(LHON)<\/strong>\uc5d0<\/strong> \uad00\ud55c<\/strong> \uac8c\uc2dc\ub41c<\/strong> \uc720\ubcd1\ub960<\/strong> \ub370\uc774\ud130\uc640<\/strong> Real World Evidence<\/strong>\ub97c<\/strong> \ube44\uad50\ubd84\uc11d\ud574<\/strong> \uc791\uc131\ub41c<\/strong> \ubcf8<\/strong> \uae00\uc740<\/strong> \ud074\ub798\ub9ac\ubca0\uc774\ud2b8\uc758<\/strong> \ub2e4\uc591\ud55c<\/strong> \ub370\uc774\ud130<\/strong> \uc138\ud2b8\ub97c<\/strong> \ud65c\uc6a9\ud574<\/strong>, LHON<\/strong>\ubcd1\ub9ac<\/strong> \ubc0f<\/strong> \ud658\uc790\ub4e4\uc758<\/strong> \uc57d\ubb3c<\/strong> \uc0ac\uc6a9<\/strong> \ud604\ud669\uc5d0<\/strong> \ub300\ud55c<\/strong> \uc774\ud574\ub3c4\ub97c<\/strong> \ub192\uc774\uae30<\/strong> \uc704\ud574<\/strong> \uc791\uc131\ub410\uc2b5\ub2c8\ub2e4<\/strong>.<\/strong><\/p>\n

\ubcf8 \uc5f0\uad6c\ub294 \ud074\ub798\ub9ac\ubca0\uc774\ud2b8\uc758 \uc218\uc11d \uacfc\ud559 \ucf58\ud150\uce20 \ud3b8\uc9d1\uc790Shyama Ghosh, \uc218\uc11d \uc5ed\ud559\uc790Shilpa Thakur, \ud3b8\uc9d1\uc7a5 Stephen DuPraw \ubc0f \uc218\uc11d \uc774\uc0acEvelyn Davila\uac00 \uacf5\ub3d9\uc73c\ub85c \uc218\ud589\ud588\uc2b5\ub2c8\ub2e4.<\/p>\n

 <\/p>\n

\u00a0<\/strong><\/p>\n

\ub808\ubc84\uc528 <\/strong>\uc2dc\uc2e0\uacbd <\/strong>\uc704\ucd95\uc99d\uc758 <\/strong>\uc804\uc138\uacc4 <\/strong>\uc720\ubcd1\ub960 <\/strong><\/h3>\n

\ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d(LHON)\uc740 \uc8fc\ub85c 10\ub300\uc640 20\ub300 \ub0a8\uc131\uc5d0\uac8c\uc11c \ubc1c\ubcd1\ub418\uc5b4 \uc2e4\uba85\uc744 \uc720\ubc1c\ud558\ub294 \ud76c\uadc0\uc131 \ubaa8\uc131\uc720\uc804 \ubbf8\ud1a0\ucf58\ub4dc\ub9ac\uc544 \ubcd1\uc99d\uc785\ub2c8\ub2e4. \u00a0\ub9dd\ub9c9\uc2e0\uacbd\uc808 \uc138\ud3ec\uac00 \ubcc0\uc131\ub418\uc5b4 \uae09\uc131 \uc2dc\ub825\uc0c1\uc2e4\uc744 \uc720\ubc1c\ud558\uba70 1\ub144\ub0b4 \uc601\uad6c\uc801 \uc2e4\uba85(\ud1b5\uc99d \uc5c6\uc74c)\uc73c\ub85c \uc774\uc5b4\uc9d1\ub2c8\ub2e4.<\/p>\n

Cortellis \uc194\ub8e8\uc158 \uc911 \ud558\ub098\uc778 The Incidence and Prevalence Database\u2122 (IPD)<\/a> \ub294 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d\uc758 \uc720\ubcd1\ub960 \ubc0f 1\ucc28 \ub3cc\uc5f0\ubcc0\uc774, \ubc1c\ubcd1\ub960\uacfc \uc0ac\ub9dd\ub960\uc5d0 \ub300\ud55c \uc815\ubcf4\ub97c \uc81c\uacf5\ud569\ub2c8\ub2e4. \uc5f0\uad6c\uc5d0 \ub530\ub974\uba74, \uc804\uc138\uacc4 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d\uc758 \uc720\ubcd1\ub960\uc740 10\ub9cc\uba85\ub2f9 4.3\uba85\uc73c\ub85c, \uc720\ub7fd\uc740 10\ub9cc\uba85\ub2f9 2.3\uba85\uc758 \uc720\ubcd1\ub960\uc744 \uae30\ub85d\ud588\uc2b5\ub2c8\ub2e4. \uc720\ubcd1\ub960\uc740 \uac01 \uad6d\uac00 \ubc0f \uc9c0\uc5ed\uc5d0 \ub530\ub77c \ub2e4\ub978\ub370, \uc720\ub7fd\uc758 \uacbd\uc6b0 \uc789\uae00\ub79c\ub4dc \ubd81\ub3d9\ubd80 (1:31,000)[i]<\/a>, \ub124\ub35c\ub780\ub4dc (1:39,000), \ub374\ub9c8\ud06c (1:54,000), \ud540\ub780\ub4dc(1:48,000)[ii]<\/a>\uc600\uace0, \ubbf8\uad6d\uc758 \uacbd\uc6b01:50,000[iii]<\/a>. \uc778\ub3c4 \ub0a8\ubd80\ub294 \ub2e8\uc77c \uc5f0\uad6c\ub97c \ud1b5\ud5741:737[iv]<\/a>\uc758 \uc720\ubcd1\ub960\uc744 \uae30\ub85d\ud588\uc2b5\ub2c8\ub2e4.<\/p>\n

 <\/p>\n

\ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d\uc758 \ub3cc\uc5f0\ubcc0\uc774 \ube44\uc728\uc740 \ud658\uc790\uc758 \uce58\ub8cc \ud6a8\uacfc\uc5d0 \uc601\ud5a5\uc744 \ubbf8\uce69\ub2c8\ub2e4.<\/strong><\/h3>\n

\ub300\ubd80\ubd84\uc758 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ud658\uc790\ub294 1\ucc28\ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ub3cc\uc5f0\ubcc0\uc774\ub85c \uc54c\ub824\uc9c4 3\uac00\uc9c0 \uc911 \ud558\ub098\uc758 \ub3cc\uc5f0\ubcc0\uc774\ub97c \uac00\uc9c0\uace0 \uc788\uc2b5\ub2c8\ub2e4. (11778G>A [ND4], 14484T>C [ND6], 3460G>A [ND1]). \uc5ec\ub7ec \uc5f0\uad6c\uc790\ub4e4\uc774 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ud658\uc790\uc758 \ub9dd\ub9c9 \uc2e0\uacbd\uc808 \uc138\ud3ec \ubcc0\uc131\uc744 \uc608\ubc29\ud558\ub294 \uc218\ub2e8\uc73c\ub85c human wild-type ND4 \uc720\uc804\uc790\ub97c \uc0ac\uc6a9\ud588\uc2b5\ub2c8\ub2e4.[v]<\/a> \ud558\uc9c0\ub9cc, \ub3cc\uc5f0\ubcc0\uc774 \ube44\uc728\uc740 \ub3d9\uc77c\ud55c \uc9c0\uc5ed \ub0b4 \ud658\uc790 \uadf8\ub8f9 \uc5d0\uc11c\ub3c4 \uc0c1\uc774\ud560 \uc218 \uc788\uc73c\uba70, \uc774\uac83\uc774 \ud658\uc790 \uc804\uccb4\uc758 \uce58\ub8cc \uacb0\uacfc\uc5d0 \uc601\ud5a5\uc744 \ubbf8\uce60 \uc218 \uc788\uc2b5\ub2c8\ub2e4.<\/p>\n

 <\/p>\n

\ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ud658\uc790\ub4e4\uc758 80%~90%\ub294 ND4, ND6 \ubc0f ND1 \ub3cc\uc5f0\ubcc0\uc774\ub97c \uac00\uc9c0\uace0 \uc788\uc73c\uba70, ND4, ND6 \ubc0f ND1\ub3cc\uc5f0\ubcc0\uc774\ub294 \uac00\uc871\ub825\uc744 \uac00\uc9c0\uace0 \uc788\ub294 \ud658\uc790\ub4e4\uc5d0\uac8c\uc11c \ud754\ud788 \ubcfc \uc218 \uc788\uc2b5\ub2c8\ub2e4. ND4\ub294 \uc804\uc138\uacc4\uc801\uc73c\ub85c \uac00\uc7a5 \ud754\ud55c \ub3cc\uc5f0\ubcc0\uc774\ub85c ND6\uc640 ND1\uac00 \uadf8 \ub4a4\ub97c \uc787\uc2b5\ub2c8\ub2e4. \ubbf8\uad6d, \ud504\ub791\uc2a4, \uc774\ud0c8\ub9ac\uc544, \uc2a4\ud398\uc778 \ubc0f \uc601\uad6d\uc5d0\uc11c 2021\ub144 \uc218\ud589\ub41cREALITY\uc5f0\uad6c\uc5d0\uc11c\ub294, ND4 (61%), ND6 (20%)\ub97c \uae30\ub85d\ud588\uace0ND1 (18%)\uc600\uc2b5\ub2c8\ub2e4.[vi]<\/a> \ub610 \ub2e4\ub978 \uc5f0\uad6c\ub4e4 \uc5d0\uc11c\ub294 \ub3cc\uc5f0\ubcc0\uc774 \ubd84\ud3ec\uc22b\uc790\uac00 \ub2ec\ub790\uc9c0\ub9cc, ND4\uac00 \uac00\uc7a5 \uc6b0\uc138\ud55c \ub3cc\uc5f0\ubcc0\uc774\uc778 \uac83\uc740 \ubcc0\ud558\uc9c0 \uc54a\uc558\uc2b5\ub2c8\ub2e4. \ubd81\ubd80 \uc544\uc77c\ub79c\ub4dc\uc5d0\uc11c \uc2dc\ud589\ub41c \ud55c \uc5f0\uad6c\uc5d0\uc11c\ub294 ND4 \ubcf4\uc720\uc790\uc758 \uc720\ubcd1\uc728\uc774 100%\ub97c \uae30\ub85d\ud588\uc2b5\ub2c8\ub2e4.[vii]<\/a><\/p>\n

 <\/p>\n

\ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d\uc5d0\uc11c \uc8fc\ubaa9\ud560 \ub9cc\ud55c \uc810\uc740,3\uac00\uc9c0 \ub3cc\uc5f0\ubcc0\uc774 \uc911 \ud558\ub098\ub97c \uac00\uc9c4 \ub0a8\uc131\uc758 \uc57d 50%\uc640 \uc5ec\uc131\uc758 \uc57d 10%\ub9cc\uc774 \uc2dc\uc2e0\uacbd \uc7a5\uc560\ub97c \uacaa\ub294\ub2e4\ub294 \uc810\uc785\ub2c8\ub2e4. \ucd5c\ucd08\ub85c \uc2dc\uac01\uc801 \uc190\uc2e4\uc744 \uacbd\ud5d8\ud558\ub294 \uc2dc\uae30\ub294 \ub3cc\uc5f0\ubcc0\uc774 \uc0c1\ud0dc\uc5d0 \uc758\ud574 \ud06c\uac8c \uc601\ud5a5\uc744 \ubc1b\uc9c0 \uc54a\uc744 \uc218\ub294 \uc788\uc9c0\ub9cc, \ud658\uc790\uc758 \uc720\uc804\uc801 \uad6c\uc131\uc740 \ubc1c\ubcd1 \ud6c4 \ubc1c\ud604\ub420 \uc218\ub3c4 \uc788\ub294 \uc790\uc5f0\uc801 \uc2dc\uac01\ud68c\ubcf5\uc5d0\ub294 \uc601\ud5a5\uc744 \ubbf8\uce60 \uc218 \uc788\uc2b5\ub2c8\ub2e4. ND6\ub3cc\uc5f0\ubcc0\uc774 \ud658\uc790\ub294 \uc9c8\ubcd1\uc758 \uc9c4\ud589\uc774 \ub35c \uc2ec\uac01\ud558\uc9c0\ub9cc, ND4 \ubc0f ND1 \ub3cc\uc5f0\ubcc0\uc774 \ud658\uc790\ub294 \uc608\ud6c4\uac00 \ub098\uc058\uace0 \uc790\uc5f0\uc801\uc73c\ub85c \ud68c\ubcf5\ud560 \uac00\ub2a5\uc131\uc774 \ub0ae\uc740 \uac83\uc73c\ub85c \ub098\ud0c0\ub0ac\uc2b5\ub2c8\ub2e4.<\/p>\n

 <\/p>\n

Real World Data<\/strong>\ub97c <\/strong>\ud65c\uc6a9\ud55c <\/strong>\ub808\ubc84\uc528 <\/strong>\uc2dc\uc2e0\uacbd <\/strong>\uc704\ucd95\uc99d <\/strong>\uc5ed\ud559 <\/strong>\ubd84\uc11d<\/strong><\/h3>\n

\ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d\uc5d0 \uc601\ud5a5\uc744 \uc8fc\ub294 \uc694\uc778\ub4e4\uc744 \ubcf4\ub2e4 \uc798 \uc774\ud574\ud558\uae30 \uc704\ud574 \ubbf8\uad6d\ub0b4\uc5d0\uc11c\uc758 \uc720\ubcd1\ub960\uacfc \uc57d\ubb3c \uc0ac\uc6a9\ub960\uc744 \ud3ec\ud568\uc2dc\ucf30\uc2b5\ub2c8\ub2e4. \ud074\ub798\ub9ac\ubca0\uc774\ud2b8 \uc5f0\uad6c\uc9c4\ub4e4\uc740 \uc758\ub8cc\uae30\uad00 \ubc0f \uc81c\uacf5\uc5c5\uccb4\ub4e4\uc758 \uc804\uc790 \uac74\uac15\uae30\ub85d(EHR), \uccad\uad6c\ub370\uc774\ud130 \ubc0f \uc57d\uad6d \ub370\uc774\ud130\uc758 Real World Data\ub97c \ubd84\uc11d\ud588\uc2b5\ub2c8\ub2e4. \ud074\ub798\ub9ac\ubca0\uc774\ud2b8\uc758 \ubbf8\uad6d Real World Data<\/a> \uc138\ud2b8\ub294 \ubbf8\uad6d\uc758 \ubaa8\ub4e0 \uc8fc\uc758 \ubcf4\ud5d8\uac00\uc785\uc778\uad6c\uc758 90%\ub97c \ucee4\ubc84\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uc5f0\uad6c\uc9c4\ub4e4\uc740 2018\ub144\uc5d0\uc11c 2021\ub144 \uc0ac\uc774\uc758 \uccad\uad6c \ub370\uc774\ud130 \uc138\ud2b8\uc5d0\uc11c ICD-10, ICD-9 \ucf54\ub4dc H47.2 \ubc0f 377.16\uc744 \uc0ac\uc6a9\ud558\uc5ec \ub9e4\ud574 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \uc9c4\ub2e8\uc744 \ubc1b\uc740 \ud658\uc790\ub4e4\uc744 \uc2dd\ubcc4\ud588\uc2b5\ub2c8\ub2e4. \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ud658\uc790\uac00 \ud655\uc778\ub418\uba74 \uc778\uc885 \ubc0f \ubbfc\uc871 \ucc28\uc774\ub97c \ubd84\uc11d\ud558\uae30 \uc704\ud574 \ud658\uc790\ub97c EHR\ub370\uc774\ud130\uc640 \ub9e4\ud551\uc2dc\ucf30\uc2b5\ub2c8\ub2e4.<\/p>\n

 <\/p>\n

\ud074\ub798\ub9ac\ubca0\uc774\ud2b8\uc758 Real World Data \ubd84\uc11d\uc5d0 \ub530\ub974\uba74, \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \uc720\ubcd1\ub960\uc774 10\ub9cc\uba85\ub2f9 1.3\ubc30 \uc99d\uac00\ud588\uc73c\uba70 \ub0a8\uc131\uacfc \ube44 \ud788\uc2a4\ud328\ub2c9\uacc4 \ubc31\uc778\uc774 LHON\uc9c4\ub2e8\uc744 \ubc1b\uc740 \uacbd\uc6b0 \ub354 \ub192\uc740 \uc720\ubcd1\ub960\uc744 \ubcf4\uc600\uc2b5\ub2c8\ub2e4(\uadf8\ub9bc 1 \ubc0f 2 \ucc38\uc870). Clarivate EHR \ub370\uc774\ud130\uc5d0 \ub530\ub974\uba74, \ube44 \ud788\uc2a4\ud328\ub2c9\uacc4 \ubc31\uc778\uc774 \uc804\uccb4 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ud658\uc790\uc758 \uc57d 85%\ub97c \ucc28\uc9c0\ud55c \ubc18\uba74, \ud751\uc778\/\uc544\ud504\ub9ac\uce74\uacc4 \ubbf8\uad6d\uc778 \ud658\uc790(11%), \uae30\ud0c0 \uc778\uc885(3%) \ubc0f \ud788\uc2a4\ud328\ub2c9\uacc4(1%) \ubbfc\uc871\uc758 \ube44\uc728\uc740 \ub0ae\uc2b5\ub2c8\ub2e4.<\/p>\n

Figure 1. \ubbf8\uad6d \ub0b4 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \uc720\ubcd1\ub960<\/p>\n

\"\"<\/p>\n

 <\/p>\n

\ucd9c\ucc98: \ud074\ub798\ub9ac\ubca0\uc774\ud2b8 Real World \uccad\uad6c \ub370\uc774\ud130<\/p>\n

 <\/p>\n

\ud45c 2. \ub0a8\uc131\uc5d0\uac8c\uc11c \ub354 \ub192\uc740 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \uc720\ubcd1\ub960<\/p>\n

\"\"<\/p>\n

\ucd9c\ucc98: \ud074\ub798\ub9ac\ubca0\uc774\ud2b8 Real World \uccad\uad6c \ub370\uc774\ud130<\/p>\n

 <\/p>\n

NDC \ucf54\ub4dc, CPT, HCPCS, ICD-9 \ubc0f ICD-10 Procedure \ucf54\ub4dc\ub97c \ud1b5\ud574 \uc2dd\ubcc4\ub41c, \uc57d\uad6d \ubc0f \uc2dc\uc220 \uccad\uad6c \uae30\ub85d\uc744 \uc0ac\uc6a9\ud558\uc5ec \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \uce58\ub8cc \ud328\ud134\uc744 \ubd84\uc11d\ud588\uc2b5\ub2c8\ub2e4. \ubd84\uc11d\uc5d0\ub294 2018\ub144\ubd80\ud130 2021\ub144\uae4c\uc9c0 \ud56d\uc0dd\uc81c, \uc2a4\ud14c\ub85c\uc774\ub4dc, \ube44\ud0c0\ubbfc \ubc0f \uc548\uc555 \uac15\ud558\uc81c(\ud504\ub85c\uc2a4\ud0c0\uae00\ub780\ub518 \uc720\uc0ac\uccb4 \ubc0f \uc54c\ud30c-\uc544\ub4dc\ub808\ub0a0\ub9b0 \uc791\uc6a9\uc81c)\uc758 \ucc98\ubc29 \ud2b8\ub80c\ub4dc\uac00 \ud3ec\ud568\ub418\uc5c8\uc2b5\ub2c8\ub2e4. RWD \ubd84\uc11d \uacb0\uacfc \ub300\ub2e4\uc218\uc758 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ud658\uc790\uac00 \ud56d\uc0dd\uc81c(\uc608: \uc544\ubaa9\uc2dc\uc2e4\ub9b0, \uc544\uc9c0\uc2a4\ub85c\ub9c8\uc774\uc2e0 , ciprofloxacin \ubc0f \uae30\ud0c0) \ub2e8\ub3c5 \ub610\ub294 \ubcd1\uc6a9 \uc694\ubc95\uc73c\ub85c \uce58\ub8cc\ub97c \ubc1b\uace0 \uc788\uc5c8\uace0 \uce58\ub8cc\uc758 \uc77c\ud658\uc73c\ub85c \ube44\ud0c0\ubbfc \ucc98\ubc29(\ube44\ud0c0\ubbfc B, C, D \ubc0f \uae30\ud0c0 \ud3ec\ud568)\uc744 \ubc1b\ub294 \ud658\uc790\uc218\ub3c4 \uc99d\uac00\ud558\uace0 \uc788\uc5c8\uc2b5\ub2c8\ub2e4. (\uadf8\ub9bc 3 \ucc38\uc870).<\/p>\n

 <\/p>\n

 <\/p>\n

\ud45c \u00a03. \ubbf8\uad6d \ub0b4 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ud658\uc790\uc758 \uc57d\ubb3c \uce58\ub8cc \ube44\uc728<\/p>\n

\"\"<\/p>\n

\ucd9c\ucc98: \ud074\ub798\ub9ac\ubca0\uc774\ud2b8 Real World \uccad\uad6c \ub370\uc774\ud130<\/p>\n

 <\/p>\n

\uce58\ub8cc <\/strong>\ubc0f <\/strong>\ub9c8\ucf13\uc561\uc138\uc2a4 <\/strong>\uacbd\ub85c\ub97c <\/strong>\uc704\ud55c <\/strong>\uc911\uc694\ud55c <\/strong>\ub2e8\uacc4<\/strong><\/h3>\n

\uac8c\uc2dc\ub41c \ub370\uc774\ud130\uc640 RWD \ubd84\uc11d \ubaa8\ub450 \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \uc720\ubcd1\ub960 \ubc0f \uc704\ud5d8\uc5d0 \ub300\ud55c \uc77c\uad00\ub41c \uc815\ubcf4\ub97c \uc81c\uacf5\ud569\ub2c8\ub2e4. \ub450 \ub370\uc774\ud130 \uc138\ud2b8 \ubaa8\ub450 \uc5f0\ub839\uacfc \uc131\ubcc4\uc774 \uc2dc\uac01 \uc7a5\uc560\ub97c \uc608\uce21\ud560 \uc218 \uc788\ub2e4\uace0 \uacb0\ub860\uc9c0\uc5c8\uc9c0\ub9cc \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d \ubcf4\uade0\uc790\uc758 \uc9c8\ubcd1 \ubc1c\ubcd1\uc744 \uc608\uce21\ud558\ub294 \uac83\uc740 \uc5ec\uc804\ud788 \u200b\u200b\uc5b4\ub824\uc6e0\uc2b5\ub2c8\ub2e4.<\/p>\n

 <\/p><\/blockquote>\n

\uba87 \uac00\uc9c0 \uc720\ub9dd\ud55c \uc2e4\ud5d8\uc801 \uce58\ub8cc\ubc95\uc774 \ud30c\uc774\ud504\ub77c\uc778\uc5d0 \uc874\uc7ac\ud558\uc9c0\ub9cc, \uc131\uacf5\uc801\uc778 \uc0c1\uc6a9\ud654\ub97c \uc704\ud574\uc11c\ub294 \ud658\uc790 \uc9d1\ub2e8\uacfc \ud604\uc7ac\uc758 \uc9c4\ub2e8 \ubc0f \uce58\ub8cc \uacbd\ub85c\uc5d0 \ub300\ud55c \uc2ec\uce35\uc801\uc778 \uc774\ud574\uac00 \ud544\uc694\ud569\ub2c8\ub2e4.<\/strong>[v]<\/a><\/p>\n

 <\/p>\n

RWD \ub370\uc774\ud130 \uceec\ub809\uc158\uc740 \uac01 \uad6d\uac00\uc5d0 \ubd84\uc0b0\ub418\uc5b4[viii]<\/a> \ubd84\ud3ec\ud558\ub294 \ud658\uc790\ub4e4\uc758 \ud76c\uc18c\uc131\uacfc \uc774\uc9c8\uc131\uc73c\ub85c \ud2b9\uc815 \uc9c0\uc5b4\uc9c0\ub294 \ud76c\uadc0\ubcd1 \ubd84\uc57c\uc5d0\uc11c \uc911\uc694\ud55c \ubd80\ubd84\uc73c\ub85c \uc790\ub9ac\uc7a1\uc558\uc2b5\ub2c8\ub2e4. \u00a0\ucd5c\uadfc \uba87 \ub144 \ub3d9\uc548, \uc758\ub8cc\uc0b0\uc5c5\uc5d0\uc11c \uc774\uac83\uc5d0 \ub300\ud55c \uc778\uc2dd\uc774 \uc99d\uac00\ud558\uace0 \uc788\uc73c\uace0, \uc774\uac83\uc774 \ud76c\uadc0\ubcd1\uc744 \uc553\uace0 \uc788\ub294 \ud658\uc790\ub4e4\uc744 \uce58\ub8cc\ub97c \uc704\ud55c \uc811\uadfc\uc131\uc744 \uac1c\uc120\ud558\uace0 \uc788\uc74c\uc744 \ubaa9\ub3c4\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4.<\/p>\n

\ud074\ub798\ub9ac\ubca0\uc774\ud2b8RWD \ub370\uc774\ud130\ub97c \ubcf4\ub2e4 \uc790\uc138\ud788 \uc54c\uc544\ubcf4\uace0 \uc2f6\ub2e4\uba74 \uc774\uacf3<\/a>\uc744 \ub20c\ub7ec \uc0b4\ud3b4 \ubd10\uc8fc\uc2dc\uae30 \ubc14\ub78d\ub2c8\ub2e4.<\/p>\n

 <\/p>\n

<\/a><\/p>\n

[i]<\/a> Sundaramurthy S et al. \u201cLeber Hereditary Optic Neuropathy-New Insights and Old Challenges.\u201d Graefe\u2019s Archive for Clinical and Experimental Ophthalmology; V.259; No.9; 9\/2021; p2461; DOI:10.1007\/s00417-020-04993-1<\/p>\n

[ii]<\/a> Ueda K et al. \u201cNationwide Epidemiological Survey of Leber Hereditary Optic Neuropathy in Japan.\u201d Journal of Epidemiology; V.27; No.9; 9\/2017; p447; DOI:10.1016\/j.je.2017.02.001<\/p>\n

[iii]<\/a> Filatov A et al. \u201cLeber Hereditary Optic Neuropathy: Case Report and Literature Review.\u201d Cureus; V.12; No.4; 4\/20\/2020; DOI:10.7759\/cureus.7745<\/p>\n

[iv]<\/a> Gowri P et al. \u201cA Hospital-Based Five-Year Prospective Study on the Prevalence of Leber\u2019s Hereditary Optic Neuropathy with Genetic Confirmation.\u201d Molecular Vision; 12\/28\/2020; p789<\/p>\n

[v]<\/a> Sahel J et al. \u201cGene Therapies for the Treatment of Leber hereditary Optic Neuropathy.\u201d International Ophthalmology Clinics; V.61; No.4; 10\/2021; p195; DOI: 10.1097\/IIO.0000000000000364<\/p>\n

[vi]<\/a> Yu-Wai-Man P et al. \u201cNatural History of Patients with Leber Hereditary Optic Neuropathy-Results from the REALITY Study.\u201d Eye; 4\/28\/2021; DOI:10.1038\/s41433-021-01535-9<\/p>\n

[vii]<\/a> Poincenot L et al. \u201cDemographics of a Large International Population of Patients Affected by Leber\u2019s Hereditary Optic Neuropathy.\u201d Ophthalmology; V.127; No.5; 5\/2020; p679; DOI: 10.1016\/j.ophtha.2019.11.014<\/p>\n

[viii]<\/a> Giannuzzi V et al. \u201cEditorial: The Use of Real World Data for Regulatory Purposes in the Rare Diseases Setting.\u201d Frontiers in Pharmacology; 13:1089033; DOI: 10.3389\/fphar.2022.1089033<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

SHYAMA GHOSH \uc218\uc11d \ucf58\ud150\uce20 \ud3b8\uc9d1\uc790 \ud074\ub798\ub9ac\ubca0\uc774\ud2b8   \ub808\ubc84\uc528 \uc2dc\uc2e0\uacbd \uc704\ucd95\uc99d(LHON)\uc5d0 \uad00\ud55c \uac8c\uc2dc\ub41c \uc720\ubcd1\ub960 \ub370\uc774\ud130\uc640 Real World Evidence\ub97c \ube44\uad50\ubd84\uc11d\ud574 \uc791\uc131\ub41c \ubcf8 \uae00\uc740 \ud074\ub798\ub9ac\ubca0\uc774\ud2b8\uc758 \ub2e4\uc591\ud55c \ub370\uc774\ud130 \uc138\ud2b8\ub97c \ud65c\uc6a9\ud574, LHON\ubcd1\ub9ac \ubc0f \ud658\uc790\ub4e4\uc758 \uc57d\ubb3c…<\/p>\n","protected":false},"author":207,"featured_media":7922,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_links_to":"","_links_to_type":0,"footnotes":""},"categories":[1315],"tags":[1414,2322,1417,1423],"class_list":["post-11605","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-life-sciences-healthcare","tag-real-world-data","tag-research-and-development-3","tag-rwd","tag-clarivate","clarivate-industry-life-sciences-and-healthcare","clarivate-product-biopharma","clarivate-product-medtech"],"acf":[],"lang":"ko","translations":{"ko":11605,"en":212172},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"pll_sync_post":[],"_links":{"self":[{"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/posts\/11605","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/users\/207"}],"replies":[{"embeddable":true,"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/comments?post=11605"}],"version-history":[{"count":3,"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/posts\/11605\/revisions"}],"predecessor-version":[{"id":320676,"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/posts\/11605\/revisions\/320676"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/media\/7922"}],"wp:attachment":[{"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/media?parent=11605"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/categories?post=11605"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/clarivate.com\/life-sciences-healthcare\/wp-json\/wp\/v2\/tags?post=11605"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}