{"id":925,"date":"2013-06-25T11:56:17","date_gmt":"2013-06-25T09:56:17","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/36-europska-cf-konferencia-1-cast-cf-registre-2\/201306"},"modified":"2014-01-01T12:25:42","modified_gmt":"2014-01-01T11:25:42","slug":"36-europska-cf-konferencia-1-cast-cf-registre-2","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/36-europska-cf-konferencia-1-cast-cf-registre-2\/925","title":{"rendered":"36. Eur\u00f3pska CF konferencia – 1. \u010das\u0165: CF registre"},"content":{"rendered":"

V Lisabone sa v polovici j\u00fana uskuto\u010dnila 36. Eur\u00f3pska CF konferencia<\/a>. T\u00e1to konferencia predstavuje najd\u00f4le\u017eitej\u0161ie odborn\u00e9 stretnutie profesion\u00e1lov zaoberaj\u00facich sa CF (lek\u00e1rov, vedcov, fyzioterapeutov) v Eur\u00f3pe, resp. spolu so severoamerickou CF konferenciou na svete. 1. \u010das\u0165 \u010dl\u00e1nkov z konferencie popisuje CF registre a porovn\u00e1vanie klinick\u00fdch v\u00fdsledkov.<\/p>\n

36. Eur\u00f3pska CF konferencia<\/strong><\/h5>\n

Na konferencii bolo prezentovan\u00fdch mno\u017estvo nov\u00fdch poznatkov, v\u00fdsledkov v\u00fdskumu, predstavovala priestor na stretnutia a formovanie stanov\u00edsk k nov\u00fdm ot\u00e1zkam v lie\u010dbe, v\u00fdskume, mana\u017emente ochorenia. Konferencia bola organizovan\u00e1 formou symp\u00f3zii, workshopov, okr\u00fahlych stolov. Tieto stretnutia boli obohaten\u00e9 tie\u017e o prezenet\u00e1cie v sekcii posterov a firemn\u00e9 prezent\u00e1cie (najm\u00e4 farmaceutick\u00fdch spolo\u010dnost\u00ed). Z\u00e1ber konferencie je pochopite\u013ene ve\u013emi \u0161irok\u00fd, prin\u00e1\u0161ame preh\u013ead niektor\u00fdch prezentovan\u00fdch poznatkov, zoskupen\u00fdch do nieko\u013ek\u00fdch d\u00f4le\u017eit\u00fdch, dominuj\u00facich oblast\u00ed.<\/p>\n

CF registre a porovn\u00e1vanie klinick\u00fdch v\u00fdsledkov<\/strong><\/h5>\n

Registre CF pacientov (s\u00fabor anonymizovan\u00fdch klinick\u00fdch inform\u00e1cii zah\u0155\u0148aj\u00faci zna\u010dn\u00fa \u010das\u0165 pacientskej popul\u00e1cie, bli\u017e\u0161ie info CF epidemiol\u00f3gia a pacientske registre<\/a>) sa stali d\u00f4le\u017eit\u00fdm n\u00e1strojom pri z\u00edskavan\u00ed nov\u00fdch vedeck\u00fdch poznatkov. CF registre s\u00fa svojim sp\u00f4sobom \u0161pecifick\u00e9, ke\u010f\u017ee v\u00fdznam registrov je pri vz\u00e1cnych ochoreniach e\u0161te vy\u0161\u0161\u00ed. S\u00fa tie\u017e jedine\u010dn\u00e9 svojou komplexnos\u0165ou, ked\u017ee zah\u0155\u0148aj\u00fa takmer cel\u00fa pacientsku popul\u00e1ciu, \u010di\u017ee celkovo desa\u0165tis\u00edce pacientov \u2013 t\u00fdmto rozsahom a pokryt\u00edm celej popul\u00e1cie sa \u0165a\u017eko h\u013ead\u00e1 paralela pri in\u00fdch ochoreniach. Preto je CF pacientsky register pova\u017eovan\u00fd za ur\u010dit\u00fd modelov\u00fd pacientsky register, ktor\u00fd ma podstatn\u00fd vedeck\u00fd v\u00fdznam, nie len z h\u013eadiska samotnej CF, ale aj v\u00fdvoja epidemiologick\u00fdch v\u00fdskumn\u00fdch postupov.<\/p>\n

 <\/p>\n

\"lisabon1\"<\/div>\n

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Jeden z \u010fal\u0161\u00edch mo\u017en\u00fdch smerov v\u00fdvoja prezentovala predn\u00e1\u0161ka Irmagard Eichler z Eur\u00f3pskej liekovej agent\u00fary. Pacientske registre sa dost\u00e1vaj\u00fa do pozornosti \u00faradov zodpovedn\u00fdch za doh\u013ead nad liekmi, ako mo\u017en\u00fd n\u00e1stroj sledovania bezpe\u010dnosti liekov \u2013 pharmacovigilance. Forma pacientsk\u00e9ho registra je pre tieto \u00farady preferovanou oproti in\u00fdm zdravotn\u00edckym registrom (ako s\u00fa napr. registre farmaceutick\u00fdch firiem vz\u0165ahuj\u00face sa k ur\u010dit\u00e9mu produktu, alebo registre zdravotn\u00edckych slu\u017eieb). R\u00e1mec v ktorom by mal prebieha\u0165 v\u00fdskum zalo\u017een\u00fd na registroch by mal vych\u00e1dza\u0165 zo \u0161tandardov European Network of Centers for Pharmacoepidemiology and Pharmacovigilance (http:\/\/www.encepp.eu<\/a>). Irmagard Eichler potvrdila postoj Eur\u00f3pskej liekovej agent\u00fary v preferencii verejne pr\u00edstupn\u00fdch \u00fadajov a ako jeden zo s\u00fa\u010dasn\u00fdch pr\u00e1vnych probl\u00e9mov spomenula defin\u00edciu a uplat\u0148ovanie vlastn\u00edckych pr\u00e1v k \u00fadajom v registroch.<\/p>\n

Ed Mckone v predn\u00e1\u0161ke o interpret\u00e1cii rozdielov v klinickom stave pacientov pouk\u00e1zal na skuto\u010dnos\u0165, \u017ee aj ke\u010f zdravotn\u00e1 starostlivos\u0165 m\u00e1 z\u00e1sadn\u00fd v\u00fdznam, je nespr\u00e1vne obmedzova\u0165 vysvetlenie t\u00fdchto rozdielov v\u00fdhradne odli\u0161nos\u0165ou v zdravotn\u00edckych slu\u017eb\u00e1ch (medzi jednotliv\u00fdmi krajinami). Pouk\u00e1zal na mno\u017estvo faktorov, ktor\u00e9 maj\u00fa na z\u00e1klade epidemiologock\u00fdch \u0161t\u00fadii vplyv na priebeh ochorenia, ale \u010dasto ich nie je mo\u017en\u00e9 ovplyvni\u0165. Pr\u00edkladom t\u00fdchto faktorov s\u00fa napr\u00edklad genetick\u00e9 odli\u0161nosti (odli\u0161n\u00e9 mut\u00e1cie CFTR g\u00e9nu), socio-ekonomick\u00e1 situ\u00e1cia, kl\u00edma a \u017eivotn\u00e9 prostredie, mikrobi\u00e1lna antibiotick\u00e1 rezistencia, neonat\u00e1lny skr\u00edning. Ako pr\u00edklad uviedol v\u00fdsledok epidemiologickej \u0161t\u00fadie z USA, ktor\u00e1 zistila, \u017ee pravdepodobnos\u0165 infekcie Pseudomonas aeruginosa je omnoho vy\u0161\u0161ia u pacientov \u017eij\u00facich na vidieku ako vo ve\u013ek\u00fdch mest\u00e1ch a t\u00e1to infekcia je n\u00e1sledne hlavnou pr\u00ed\u010dinou poklesu p\u013e\u00facnych funkcii. Taktie\u017e pacienti \u017eij\u00faci v miernej\u0161ej (subtropickej kl\u00edme) mali vy\u0161\u0161ie riziko pseudomon\u00e1dovej infekcie v porovnan\u00ed so severnej\u0161\u00edmi regi\u00f3nmi, aj ke\u010f rozdiel nebol tak\u00fd v\u00fdrazn\u00fd ako pri porovnan\u00ed pacientov z vidieka a miest. V s\u00favislosti s rizikami \u017eivotn\u00e9ho prostredia (zne\u010distenia ovzdu\u0161ia) a antibiotickej rezistencie pouk\u00e1zal na skuto\u010dnos\u0165, \u017ee v oboch pr\u00edpadoch je situ\u00e1cia v niektor\u00fdch \u0161t\u00e1toch v\u00fdchodnej Eur\u00f3py ve\u013emi nepriazniv\u00e1.<\/p>\n

Kris De Boeck pouk\u00e1zala na to, \u017ee rozdiely v klinickom stave pod\u013ea registrov s\u00fa \u010dasto d\u00f4sledkom odli\u0161n\u00fdch princ\u00edpov na ktor\u00fdch s\u00fa v jednotliv\u00fdch krajin\u00e1ch postaven\u00e9. Napr\u00edklad je zna\u010dn\u00fd rozdiel v diagnostike medzi jednotliv\u00fdmi krajinami \u2013 v podieli pacientov, ktor\u00ed maj\u00fa presne ur\u010den\u00fd genotyp, rozsahu pou\u017e\u00edvania chloridov\u00fdch testov. Napr\u00edklad v Nemeckom CF registri malo iba 40 % pacientov diagn\u00f3zu potvrden\u00fa chloridov\u00fdmi testami a 24 % nemalo \u201cklinicky dokumentovan\u00fa diagn\u00f3zu\u201c. Inak povedan\u00e9 je rozdielny rozsah v akom s\u00fa v jednotliv\u00fdch krajin\u00e1ch do registrov zahrnut\u00ed jedinci s miernymi CFTR mut\u00e1ciami a atypick\u00fdm (miernym) priebehom ochorenia. V tomto kontexte by pomohlo zavedenie jasnej defin\u00edcie kto m\u00e1 by\u0165 zaraden\u00fd do registra. Jednou z ciest k tejto \u0161tandardiz\u00e1cii by mohol by\u0165 aj s\u00fabor 124 mut\u00e1cii ktor\u00e9 boli ozna\u010den\u00e9 ako \u201cvyvol\u00e1vaj\u00face ochorenie\u201c a s\u00fa definovan\u00e9 na str\u00e1nke www.cftr2.org<\/a>. Pacienti s miernymi mut\u00e1ciami by mali by\u0165 v registroch zahrnut\u00ed, ale z\u00e1rove\u0148 by mali by\u0165 \u013eahko odl\u00ed\u0161ite\u013en\u00ed.<\/p>\n

Modern\u00e1 genetick\u00e1 diagnostika umo\u017enila odhalenie v\u00e4\u010d\u0161ieho mno\u017estva \u013eud\u00ed, ktor\u00ed maj\u00fa mierne mut\u00e1cie a atypick\u00fd priebeh ochorenia, ich po\u010det relat\u00edvne rastie a je zrejm\u00e9 \u017ee ich zast\u00fapenie v registroch m\u00e1 vplyv na celkov\u00e9 \u0161tatistiky, pri\u010dom je zrejm\u00e9 \u017ee ich \u201cvylep\u0161uj\u00fa\u201c – v\u00e4\u010d\u0161\u00ed po\u010det pacientov s miernymi mut\u00e1ciami znamen\u00e1 lep\u0161ie priemern\u00e9 p\u013e\u00facne funkcie, relat\u00edvne menej pacientov s klinick\u00fdmi komplik\u00e1ciami, vy\u0161\u0161\u00ed priemern\u00fd vek do\u017eitia. Zatia\u013e \u010do v roku 1982 bolo v USA diagnostikovan\u00fdch po 18-tom roku \u017eivota 2.8 % pacientov, ich podiel do roku 2002 vzr\u00e1stol nad 4 %. Preto vyvst\u00e1va ot\u00e1zka, do akej miery t\u00e1to zmena v zast\u00fapen\u00ed pacientov \u201cskres\u013euje\u201c \u00fadaje. To bolo predmetom v\u00fdskumu t\u00edmu pod veden\u00edm Zhe Hui Hoo z University of Shefield prezentovan\u00e9ho formou posteru, ktor\u00fd sk\u00famal vplyv na priemern\u00fa d\u013a\u017eku \u017eivota. Pod\u013ea ich zisten\u00ed tento vplyv celkovo nie je z\u00e1sadn\u00fd a je nepochybn\u00e9, \u017ee jednozna\u010dn\u00e9 dlhodob\u00e9 trendy v lie\u010dbe CF (pomal\u0161\u00ed pokles p\u013e\u00facnych funkcii s vekom a predl\u017euj\u00faci sa priemern\u00fd vek do\u017eitia) by boli evidentn\u00e9 aj ak by nepribudlo zna\u010dn\u00e9 mno\u017estvo pacientov s miernym priebehom ochorenia.<\/p>\n

Na t\u00e9mu metodologick\u00fdch probl\u00e9mov v epidemiologickom v\u00fdskume nadviazal aj Chris Goss zo Spojen\u00fdch \u0160t\u00e1tov. Pouk\u00e1zal na skuto\u010dnos\u0165, \u017ee drobn\u00e9 detaily neklinick\u00e9ho charakteru \u2013 ako sp\u00f4sob a \u010das zad\u00e1vania \u00fadajov, m\u00f4\u017eu z\u00e1sadne skreslova\u0165 celkov\u00e9 v\u00fdsledky. Uviedol pr\u00edklad porovnania p\u013e\u00facnych funkcii CF pacientov v USA a vo Ve\u013ekej Brit\u00e1nii. V porovnan\u00ed mali pacienti v Brit\u00e1nii v priemere o 4 % ni\u017e\u0161ie hodnoty p\u013e\u00facnych funkcii, ale podrobnou anal\u00fdzou sa zistilo, \u017ee tento\u00a0 rozdiel vypl\u00fdva iba z odli\u0161n\u00e9ho sp\u00f4sobu ak\u00fdm s\u00fa \u00fadaje zad\u00e1van\u00e9 \u2013 v USA pri ka\u017edej kontrole a v Brit\u00e1nii raz ro\u010dne a to v zime, ke\u010f s\u00fa priemern\u00e9 hodnoty p\u013e\u00facnych funkcii CF pacientov najni\u017e\u0161ie.<\/p>\n

\u0160pecifickej oblasti \u2013 v\u00fdsledkom CF registrov pri ochoreniach pe\u010dene sa venoval Anders Lindblad. Okolo 10 % CF pacientov v Eur\u00f3pe m\u00e1 ochorenie pe\u010dene. Toto zast\u00fapenie je podobn\u00e9 vo v\u0161etk\u00fdch vekov\u00fdch skupin\u00e1ch s v\u00fdnimkou det\u00ed pod 10 rokov, kde je ni\u017e\u0161ie. Celkovo s\u00fa v\u0161ak medzi krajinami zna\u010dn\u00e9 rozdiely \u2013 napr\u00edklad cirh\u00f3zou pe\u010dene trp\u00ed pod\u013ea registra v Belgicku 3 % pacientov, vo \u0160v\u00e9dsku 6 % a v Holandsku a\u017e 11 %. Tieto rozdiely prip\u00edsal odli\u0161n\u00fdm pr\u00edstupom k diagnostike a v s\u00falade s ostatn\u00fdmi predn\u00e1\u0161aj\u00facimi pouk\u00e1zal v r\u00e1mci registra na potrebu \u0161tandardiz\u00e1cie.<\/p>\n","protected":false},"excerpt":{"rendered":"

V Lisabone sa v polovici júna uskutočnila 36. Európska CF konferencia. Táto konferencia predstavuje najdôležitejšie odborné stretnutie profesionálov zaoberajúcich sa CF (lekárov, vedcov, fyzioterapeutov) v Európe, resp. spolu so severoamerickou CF konferenciou na svete. 1. časť článkov z konferencie popisuje … Continued<\/a><\/p>\n","protected":false},"author":7,"featured_media":1042,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[2],"tags":[237,257],"class_list":["post-925","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-informacie","tag-cf-registre","tag-konferencia"],"yoast_head":"\n36. Eur\u00f3pska CF konferencia - 1. \u010das\u0165: CF registre - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"1. \u010das\u0165 \u010dl\u00e1nkov z 36. 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