†KvwiqwbK wfjvm m¨vgwc−s (wmwfGm) cix¶v - EuroGentest · 2013-01-07 · †KvwiqwbK wfjvm...

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†KvwiqwbK wfjvm m¨vgwc-s (wmwfGm) cix¶v †ivMx‡`i ÁvZe¨

Transcript of †KvwiqwbK wfjvm m¨vgwc−s (wmwfGm) cix¶v - EuroGentest · 2013-01-07 · †KvwiqwbK wfjvm...

Page 1: †KvwiqwbK wfjvm m¨vgwc−s (wmwfGm) cix¶v - EuroGentest · 2013-01-07 · †KvwiqwbK wfjvm m¨vgwc−s (wmwfGm) cix¶v ciewZ© Aby‡”Q`My‡jv‡Z Avcbv‡K wmwfGm cix¶v

†KvwiqwbK wfjvm m¨vgwc−s (wmwfGm) cix¶v

†ivMx‡`i ÁvZe¨

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†KvwiqwbK wfjvm m¨vgwc−s (wmwfGm) cix¶v ciewZ© Aby‡”Q`My‡jv‡Z Avcbv‡K wmwfGm cix¶v m¤ú‡K© Z_¨vejx cÖ`vb Kiv n‡q‡Q| †mLv‡b wmwfGm cix¶v Kx, KLb I Kxfv‡e GUv Kiv nq, cix¶vi c‡i Kx nq, Ges G cix¶v Kiv‡j m¤¢ve¨ DcKvi Kx I Zv‡Z SzuwK K‡ZvUzKz, G mKj wel‡q Avcbv‡K AewnZ Kiv n‡q‡Q| GB wjd‡jUwU Ggbfv‡e ˆZwi Kiv n‡q‡Q hv‡Z K‡i Avcbvi ¯̂v¯_¨ Dc‡`óvM‡Yi mv‡_ Av‡jvPbvi cvkvcvwk Avcwb G‡KI e¨envi Ki‡Z cv‡ib hv Avcbvi cÖ‡qvRbxq I MyiyZ¡c~Y© cÖkœ Ki‡Z Avcbv‡K mvnvh¨ Ki‡Z cv‡i| wmwfGm cix¶v Kx? Kªgea©gvb c−¨v‡m›Uv ev dz‡ji Askwe‡kl‡K KwiqwbK wfjvB e‡j| wmwfGm cix¶vi Rb¨ Mfv©e¯_vq KwiqwbK wfjvB †_‡K mvgvb¨ GKUz bgybv hvuPvB Kivi Rb¨ msMÖn Ki‡Z nq| M‡f©i wkkyi wRb ev †Kªv‡gvR‡gi we‡kl †Kv‡bv †R‡bwUK Ae¯_v m¤ú‡K© Rvbvi Rb¨ G cix¶v Kiv nq| †ek wKQz Kvi‡Y Avcbv‡K G cix¶v Kivi civgk© †`Iqv †h‡Z cv‡i| • Avcwb GKRb eq¯‹ gv (35 eQi ev D‡™a©) n‡j Avcbvi mš—v‡bi g‡a¨

wRbNwUZ ˆewkó, †hgb WvDb wmb‡Wªvg, cvIqvi SzuwK †ewk _v‡K| • Avcbvi ev Avcbvi cvU©bv‡ii wRbNwUZ Ggb †Kv‡bv AevwÃZ Ae¯_v

Av‡Q hv Avcbv‡`i wkkyi g‡a¨ AbycÖ‡ek Ki‡Z cv‡i| • Avcbvi ev Avcbvi cvU©bv‡ii cwiev‡i wRbNwUZ Ggb †Kv‡bv AevwÃZ

Ae¯_v Av‡Q hv Avcbv‡`i wkkyi g‡a¨ AbycÖ‡ek Ki‡Z cv‡i| • Gi c~‡e© Avcbvi wkky AevwÃZ wRbNwUZ mgm¨v wb‡q Rb¥MÖnY K‡iwQj| • Mfv©e¯_vq Avcwb Ab¨ †Kv‡bv cix¶v Kwi‡q‡Qb (†hgb, AvjUªvmvDÛ,

byPvj UªvÝjy‡mwÝ ¯‹¨vb, ev i³ cix¶v) hv wb‡ ©̀k K‡i †h, Avcbvi M‡f©i wkkyi AevwÃZ †Kv‡bv †R‡bwUK RwUjZvi AvkKv Av‡Q|

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Bjvm‡÷ªkb: †i‡eKv †R †KÈ

www.rebeccajkent.com [email protected]

I›UvwiI K¨vÝvi BÝwUwUDU A¨vc−vBW gwjKzjvi As‡KvjwR wcÖ‡Ým gvMv©‡iU nmwcUvj 7g Zjv, iyg b¤̂i Ñ 7-125 610 BDwbfvwm©wU G‡fby¨ Ui‡›Uv, I›UvwiI, Gg5wR 2Gg9 K¨vbvWv

Ontario Cancer Institute Applied Molecular Oncology Princess Margaret Hospital 7th Floor, Room no: 7-125 610 University Avenue Toronto, Ontario, M5G 2M9 Canada

February 2009

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†deªyqvwi 2009

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wmwfGm-Gi wel‡q GMywj mvgvb¨ KUv civgk©| Avcwb AviI Rvb‡Z cvi‡eb wb‡gœi wVKvbvmg~n †_‡K: Aidv‡bU wd« I‡qe mvBU www.orpha.net †_‡K A¯̂vfvweK †ivM-e¨vwa, wPwKrmvi Rb¨ cix¶v-wbix¶v I Ilya-cZª wel‡q Ges mviv BD‡iv‡c Ab¨vb¨ wjsK m¤ú‡K© Avcwb AviI we —̄vwiZ Rvb‡Z cvi‡eb| BD‡iv‡Rb‡U÷ wd« I‡qe mvBU www.eurogentest.org †_‡K †R‡bwUK †U÷ Ges BD‡iv‡c Ab¨vb¨ wjsK m¤ú‡K© Avcwb AviI we —̄vwiZ Rvb‡Z cvi‡eb| A_ev Avcbvi ¯_vbxq †R‡bwUK wK¬wbK|

10 KLb wmwfGm cix¶v Kiv nq? mvaviYZ Mf©avi‡Yi 10 †_‡K 13 mßv‡ni g‡a¨ wmwfGm cix¶v Kiv nq| Kxfv‡e wmwfGm cix¶v Kiv nq? Kªgea©gvb c−¨v‡m›Uv ev dzj †_‡K mvgvb¨ cwigvb †Kv‡li bgybv msMÖn Kiv nq hv‡Z wkkyi wRb _v‡K| cÖ_‡g AvëªvmvD‡Ûi mvnv‡h¨ wkky I dz‡ji Ae¯_vb m¤ú‡K© †R‡b †bIqv nq; Gic‡i, wUmy ev †Kvl msMÖn Kiv nq| m¤¢ve¨ `yfv‡e GB †Kvl msMÖn Kiv n‡q _v‡K| Wv³vi ev bvm© M‡f©i g‡a¨ wkky I dz‡ji Ae¯_v‡bi K_v we‡ePbv K‡i Kxfv‡e bgybv msMÖn Kiv mePvB‡Z Dchy³ n‡e †m m¤ú‡K© wm™avš— MÖnY Ki‡eb| AwaKvsk †¶‡ZªB †c‡Ui w`K †_‡K Kiv nq| 1. †c‡Ui ga¨ w`‡q †c‡Ui Z¡‡Ki g‡a¨ myP dzwU‡q Rivqyi †fZ‡i Aew¯_Z dzj †_‡K bgybv (†Kvl) msMÖn Kiv nq| Gi Rb¨ Wv³vi ev ¯̂v¯_¨Kgx©MY AvëªvmvDÛ e¨envi K‡i _v‡Kb hv‡Z K‡i Zvuiv mwVK RvqMv‡Z myP cÖ‡ek Kiv‡Z cv‡ib| Gici mvgvb¨ †Kvl my‡Pi gva¨‡g †U‡b G‡b cix¶vi Rb¨ j¨ve‡iUwi‡Z cvVv‡bv nq|

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mviwf· ev Mfv©k‡qi msKxY© cÖ‡ek Øvi w`‡q GK †Rvov di‡mc mviwf‡·i ga¨ w`‡q Rivqy‡Z cÖ‡ek Kiv‡Z nq| Gi AbyfzwZ wKQzUv w¯§qvi †U‡÷i g‡Zv| Gi Rb¨ Wv³vi ev ¯̂v¯_¨Kgx©MY AvëªvmvDÛ e¨envi K‡i _v‡Kb hv‡Z K‡i Zvuiv mwVK RvqMv‡Z di‡mcwU wb‡q †h‡Z cv‡ib| Gici di‡m‡ci mvnv‡h¨ ev †QvÆ mvKkb K¨v‡_Uv‡ii mvnv‡h¨ mvgvb¨ †Kvl †U‡b G‡b cix¶vi Rb¨ j¨ve‡iUwi‡Z cvVv‡bv nq| wmwfGm cix¶v wK †e`bv`vqK? hw`I Kx Kiv n‡”Q Zv c~e© †_‡KB mKj‡K AewnZ Kiv nq Zey †ewki fvM gwnjvB e‡jb, GUv †e`bv`vqK bv n‡jI A¯̂w —̄Ki, Avi iRtkÖveKvjxb e¨v_vi g‡Zv e¨v_v| †h mg —̄ gwnjv‡`i †c‡Ui w`K w`‡q bgybv msMÖn Kiv nq Zvuiv e‡jb, Pvc †`Iqvi g‡Zv Abyf~wZ nq Avi c‡i mvgvb¨ e¨v_v| hvu‡`i mviwf· w`‡q bgybv msMÖn Kiv nq Zvuiv e‡jb Zvu‡`i Kv‡Q g‡b n‡q‡Q †hb GKwU w¯§qvi †U÷ Kiv n‡q‡Q|

4 • wmwfGm-Gi Kvi‡Y Mf©cvZ-Gi Avk•Kv (†c‡Ui w`K n‡Z ev mviwf‡·i

ga¨ w`‡q Ñ Dfq †¶‡ZªB)| • †U‡÷i djvdj †c‡Z K‡Zv mgq jv‡M| • Kxfv‡e †U‡÷i djvdj cvIqv hvq ev msMÖn Ki‡Z nq| • M‡f©i wkkywUi †R‡bwUK Amyweav aiv co‡j Avcbvi Kx Kx KiYxq Av‡Q| • G ai‡bi cwiw¯_wZ Avcbvi I Avcbvi cvU©bv‡ii gvbwmK Ae¯_v‡K

Kxfv‡e cÖfvweZ Ki‡Z cv‡i| wmwfGm cix¶v Kivi wm™avš— †bIqvi c~‡e© GMywj wKQz welq hv Avcbv‡K wPš—v Ki‡Z n‡e| Avcwb ÔcÖvqk wRÁvwmZ cÖkœÕ wk‡ivbv‡gi wjd‡jUwUI †`L‡Z cv‡ib, †mLv‡b AviI wKQz cÖkœ m¤ú‡K© ejv Av‡Q hv Avcwb Avcbvi Wv³vi‡K wRÁvmv Ki‡Z cv‡ib| G cÖkœgvjv Avcbvi g‡ZvB fz³‡fvMx‡`i KvQ †_‡K msM„nxZ| Avcwb Ô†R‡bwUK †U÷ KxÕ wk‡ivbv‡gi wjd‡jUwUI GK bRi †`‡L wb‡Z cv‡ib| Avcbvi cÖkœ, Avcbvi D‡ØM ev Avcbvi Kv‡Q MyiyZ¡c~Y© †h †Kv‡bv welq Avcwb wb‡q Avm‡Z cv‡ib Ñ cv‡Q wRÁvmv Ki‡Z fz‡j hvb, ZvB Avcbvi wRÁvm¨My‡jv wj‡L †djyb| Avcbvi hw` †`vfvlxi cÖ‡qvRb nq Zvn‡j c~‡e©B Rvbvb|

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GBPAvBwf msKªgY Avcwb hw` GBPAvBwf cwRwUf nb Z‡e Avcbvi GBPAvBwf fvBivm wmwfGm †U‡÷i Kvi‡Y Avcbvi wkkyi g‡a¨ msKªwgZ nevi GKwU m¤¢vebv †_‡K hvq| ZvB, †m †¶‡Zª Avcbvi DwPZ n‡e welqwU Avcbvi Wv³vi ev ¯̂v¯_¨Kgx©‡K AewnZ Kiv hv‡Z K‡i Zvuiv Dchy³ e¨e¯_v wb‡Z cv‡ib †hb Avcbvi GBPAvBwf fvBivm Avcbvi wkkyi †fZi msKªwgZ nevi m¤¢vebv Kwg‡q Avbv hvq|

wmwfGm cix¶v Kiv‡bvi wel‡q wm™avš — MÖnY Mfv©e¯_vq wmwfGm cix¶v Kivi wm™avš— †bIqvwU GKwU RwUj KvR| GUv g‡b ivLv Riywi †h, bv PvB‡j Avcwb wmwfGm cix¶v bvI Kiv‡Z cv‡ib| Avcwb ZLbB wmwfGm cix¶v Kiv‡eb hLb Avcwb I Avcbvi cvU©bvi g‡b Ki‡eb †h, G cix¶v Kiv‡j †h Z_¨ Avcbviv cv‡eb Zv Riywi, Ges G‡Z SzuwK h‡ZvUzKz Av‡Q Zv Avcbviv wb‡Z cv‡ib| Avcbv‡`i Kx Ki‡j me PvB‡Z fvj n‡e Zv Rvbvi Rb¨ wb‡gœi welqMywj Avcbviv Avcbv‡`i Wv³v‡ii mv‡_ Av‡jvPbv K‡i wb‡Z cv‡ib| • †h mg —̄ A¯̂vfvweKZvi Rb¨ †U÷ Kiv‡Z n‡e| • †h ai‡Yi wRb msKªvš— A¯̂vfvweKZv Avcbvi mš—v‡bi g‡a¨ Avk•Kv K‡i G

†U÷ Avcwb Kiv‡Z Pv‡”Qb| • †U÷ msKªvš— Z_¨vejx Ges G †U÷ Avcbv‡K Kx m¤ú‡K© AewnZ Ki‡e| • G †U÷ K‡ZvUv wbf©i‡hvM¨| • AwbwðZ djvdj cvevi K‡ZvUv Avk•Kv _v‡K hvi Rb¨ cybivq †U÷

Kiv‡Z n‡Z cv‡i|

8 wmwfGm cix¶vi c‡i Kx n‡e? 15-20 wgwb‡Ui g‡a¨ cix¶vi cÖwKªqv †kl n‡q hv‡e| Z‡e cix¶vi Rb¨ Avmvi mgq Avcbvi mv‡_ _vKvi Rb¨ GKRb m•Mx wb‡q Avmv fvj| cix¶vi c‡i K‡qK w`‡bi Rb¨ Avcbv‡K wKQy Amyweav ev evav-wb‡la mnRfv‡e wb‡Z n‡e| fvix wKQy D‡Ëvjb Kiv ev KwVb †Kv‡bv e¨vqvg Kiv hv‡e bv| wmwfGm †U‡÷i c‡i wKQz wKQz gwnjvi mvgvb¨ i³¶iY I iRtkÖveKvjxb e¨v_vi g‡Zv e¨v_v n‡Z †`Lv hvq; GUv ¯̂vfvweK| Z‡e Avcbvi hw` †ewk i³¶iY nq Z‡e Zv Avcbvi Wv³vi‡K AewnZ Kiyb| i³¶iY e›a bv nIqv ch©š— †hŠbm•Mg †_‡K weiZ _vKv DwPZ| wmwfGm †U‡÷ SzuwK Kx Kx? wmwfGm †U‡÷i Kvi‡Y 100 R‡bi g‡a¨ 1 †_‡K 2 R‡bi Mf©cvZ n‡Z cv‡i (1% †_‡K 2%)| GUv †Kb nq Zv Avgiv GLbI Rvwb bv| Zv hv-B †nvK, 100-

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Gi g‡a¨ 98 †_‡K 99wU gwnjviB Mf©aviYKvj ¯̂vfvweK n‡e| wmwfGm †U÷ wK wbf©i‡hvM¨? Avcbvi Wv³v‡ii mv‡_ civgk© K‡i Av‡MB Avcbv‡K †R‡b wb‡Z n‡e †h, wVK †Kvb †R‡bwUK †U÷wU Avcbvi Kiv‡Z n‡e| GwU G Rb¨ Riywi †h, wfbœ wfbœ †U‡÷ wfbœ wfbœ dj cvIqv hvq| KLbI KLbI G cix¶vi djvdj m‡š—vlRbK nq bv, d‡j cybivq †U÷ Kivi cÖ‡qvRb n‡Z cv‡i| wmwfGm †U‡÷ wK mKj cÖKvi †R‡bwUK Amyweav mbv³ Kiv m¤¢e nq? †h Kvi‡Y †U÷wU Kiv n‡q‡Q †Kej †mwUi m¤ú‡K© Z_¨ Rvbv hvq| Aek¨, H djvdj †_‡K Ab¨ †Kv‡bv welqI †ewi‡q Avm‡Z cv‡i| wKš—y, Ggb †Kv‡bv mvaviY †U÷ †bB hv †_‡K mKj cÖKvi †R‡bwUK Ae¯_v m¤ú‡K© Rvbv hvq| A¨vgwbqwmb‡_wm‡mi djvdj †c‡Z K‡Zv mgq jv‡M? djvdj †c‡Z K‡Zv mgq jvM‡e Zv wbf©i K‡i †U‡÷i ai‡Yi Dci| †Kv‡bv †Kv‡bv †U‡÷i Rb¨ 3 w`bB h‡_ó, Avevi †Kv‡bv †Kv‡bv †U‡÷i djvdj †c‡Z 2-3 mßvn †j‡M hvq| Z‡e, mgq †ewk jvM‡jB Ggb fveevi †Kv‡bv KviY †bB †h, A¯̂vfvweK wKQy NU‡Q| GgbI n‡Z cv‡i †h, †KvlMy‡jv †e‡o DV‡Z mgq †ewk wb‡”Q| Avcwb hw` †Kv‡bv AmvaviY †R‡bwUK Ae¯_vi Rb¨ wmwfGm cix¶v Kwi‡q _v‡Kb Z‡e Wv³v‡ii KvQ †_‡K †R‡b wbb Avcbvi cix¶vi

6 djvdj †c‡Z K‡Zv mgq jvM‡e| Avcbvi †U‡÷i djvdj cÖ —̄yZ n‡q †M‡j Wv³v‡ii mv‡_ Avjv‡ci Rb¨ Avcbv‡K WvKv n‡e, A_ev Ab¨ †Kv‡bvfv‡eI Avcbv‡K djvdj †`Iqv †h‡Z cv‡i, †hgb †Uwj‡dv‡bi gva¨‡g| G wel‡q †U‡÷i w`bB Avcwb Wv³v‡ii mv‡_ Avjvc K‡i †R‡b wb‡eb| Wv³viMY Avcbv‡K Avcbvi I wkkywUi g•M‡ji Rb¨ mwVK wm™avš— wb‡Z mvnvh¨ Ki‡eb| M‡f©i wkkywUi hw` A¯̂vfvweK †R‡bwUK Ae¯_v aiv c‡o Z‡e Kx n‡e? djvd‡j hw` M‡f©i wkkywUi A¯̂vfvweK †R‡bwUK Ae¯_v aiv c‡o Z‡e Wv³vi ej‡eb †h †m A¯̂vfvweKZvwU Kx ai‡Yi, Ges GwU wkkywUi Dci Kx ai‡Yi cÖfve †dj‡Z cv‡i| Wv³vi Avcbv‡K GUvI Rvbv‡eb †h H Ae¯_vi Rb¨ †Kv‡bv e¨e¯_v ev wPwKrmv Av‡Q wK bv; H Ae¯_v‡Z Avcbvi Rb¨ Kx Kx c_ †Lvjv Av‡Q; bvwK M‡f©i mš—vb‡K bó K‡i †dj‡Z n‡e| Wv³vi Avcbv‡K GI Rvbv‡eb, Avcbvi I Avcbvi mš—v‡bi Rb¨ †KvbUv mePvB‡Z g•MjRbK| KLbI KLbI G †U‡÷ †KªvgR‡gi wKQy wKQy AmvgÄm¨c~Y© web¨vm aiv c‡o wKš—y wkkyi Ic‡i Gi cÖfve m¤ú‡K© Lye †ewk wKQy Rvbv †bB|

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