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Celostátní registr pacientů s roztroušenou sklerózou ReMuS Tisk E-mail
Čtvrtek, 23 srpen 2012

Nadační fond Impuls zahajuje unikátní projekt Celostátního registru pacientů s roztroušenou sklerózou ReMuS. Završí se tím desetileté úsilí o vznik registru, který konečně ukáže celkový počet pacientů s diagnózou RS v České republice.

Nadační fond Impuls zahajuje unikátní projekt Celostátního registru pacientů s roztroušenou sklerózou ReMuS. Završí se tím desetileté úsilí o vznik registru, který konečně ukáže celkový počet pacientů s diagnózou RS v České republice. Jeho spolufinancování z nadačních zdrojů je ojedinělým projektem v zemích EU. Má ale i podporu zdravotních pojišťoven. Odhad nákladů v prvních dvou letech je 9 mil.Kč.

Odborným garantem registru je Sekce neuroimunologie a likvorologie (SNIL) České neurologické společnosti, což je volený orgán, zastupující neurology, zabývající se RS.

 

Registr bude poskytovat data (se zajištěnou ochranou osobních údajů) plátcům zdravotní péče a ostatním státním institucím, což je důležité pro posouzení efektivity nákladné terapie. Včasná léčba zabezpečuje zařazení pacientů s roztroušenou sklerózou do pracovního procesu, a tím fakticky snižuje celkovou finanční náročnost. Dalším důležitým využitím registru je plánování a odhad budoucích nákladů na léčbu této skupiny pacientů. Informace budou sloužit i pro vědecké účely, jak v rámci lokálních center po celé republice, tak v budoucnu i v rámci Evropského registru pacientů s RS (organizovaného European Multiple Sclerosis Platform a podporovaného Evropskou komisí) a mezinárodní databáze.

                 

Impuls se jako jediný z nadačních fondů v České republice zabývá podporou pacientů s roztroušenou sklerózou. Financuje projekty, podporující léčbu demyelinizačních onemocnění, především roztroušené sklerózy. Podílí se také na realizaci vědeckého výzkumu a osvětové činnosti, vztahující se k dané problematice.

 

Z peněz Nadačního fondu Impuls je financována řada výzkumných a léčebných projektů. Týká se to například nákupu léčebného vybavení a přístrojů nebo speciálního vybavení pro fyzioterapii, včetně nákladů na odborné fyzioterapeuty. Impuls podpořil i ojedinělý fyziopsychoterapeutický projekt Setkání duše s tělem a čtyřiadvacetihodinový cvičební maratón pacientů. Hradí také psychoterapeutickou péči, kterou mnozí pacienti nezbytně potřebují. Od vzniku nadačního fondu představuje celková částka vynaložených peněz 11 miliónů korun.

 

 

Jana Vojáčková

výkonná ředitelka

Nadační fond IMPULS

www.multiplesclerosis.cz

 

 

kontakt:

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