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  • Effective planning of clinical trials requires an appropriate number of patients who fulfil given inclusion criteria. In the case of so called %22orphan%22 diseases, such as Duchenne and Becker muscular dystrophy (DMD/BMD), the number of suitable patients within one country is usually limited. We developed a detailed registry of Czech and Slovak DMD/BMD patients which may contribute to cooperation on the European level. The registry uses internet and database technologies with a multilevel architecture. Patients may view their own data. As of May 2008, 163 patients have been registered in the database. The registry provides a detailed phenotypic and genotypic description of patients. The main purpose of such a registry is the time-effective recruitment of eligible patients for a clinical trial or therapy and may allow the anticipation of possible future effects of appropriate therapy on individual patients
  • Effective planning of clinical trials requires an appropriate number of patients who fulfil given inclusion criteria. In the case of so called %22orphan%22 diseases, such as Duchenne and Becker muscular dystrophy (DMD/BMD), the number of suitable patients within one country is usually limited. We developed a detailed registry of Czech and Slovak DMD/BMD patients which may contribute to cooperation on the European level. The registry uses internet and database technologies with a multilevel architecture. Patients may view their own data. As of May 2008, 163 patients have been registered in the database. The registry provides a detailed phenotypic and genotypic description of patients. The main purpose of such a registry is the time-effective recruitment of eligible patients for a clinical trial or therapy and may allow the anticipation of possible future effects of appropriate therapy on individual patients (en)
Title
  • Characterization of the DMD/BMD patient population in Czech Republic and Slovakia using an innovative registry approach
  • Characterization of the DMD/BMD patient population in Czech Republic and Slovakia using an innovative registry approach (en)
skos:prefLabel
  • Characterization of the DMD/BMD patient population in Czech Republic and Slovakia using an innovative registry approach
  • Characterization of the DMD/BMD patient population in Czech Republic and Slovakia using an innovative registry approach (en)
skos:notation
  • RIV/65269705:_____/09:#0000839!RIV10-MZ0-65269705
http://linked.open...avai/riv/aktivita
http://linked.open...avai/riv/aktivity
  • P(1M0571), P(GD204/08/H054), V
http://linked.open...iv/cisloPeriodika
  • 4
http://linked.open...vai/riv/dodaniDat
http://linked.open...aciTvurceVysledku
http://linked.open.../riv/druhVysledku
http://linked.open...iv/duvernostUdaju
http://linked.open...titaPredkladatele
http://linked.open...dnocenehoVysledku
  • 306797
http://linked.open...ai/riv/idVysledku
  • RIV/65269705:_____/09:#0000839
http://linked.open...riv/jazykVysledku
http://linked.open.../riv/klicovaSlova
  • muscular dystrophy (en)
http://linked.open.../riv/klicoveSlovo
http://linked.open...odStatuVydavatele
  • GB - Spojené království Velké Británie a Severního Irska
http://linked.open...ontrolniKodProRIV
  • [34B50F22AF71]
http://linked.open...i/riv/nazevZdroje
  • 0960-8966
http://linked.open...in/vavai/riv/obor
http://linked.open...ichTvurcuVysledku
http://linked.open...cetTvurcuVysledku
http://linked.open...vavai/riv/projekt
http://linked.open...UplatneniVysledku
http://linked.open...v/svazekPeriodika
  • 19
http://linked.open...iv/tvurceVysledku
  • Vondráček, Petr
issn
  • 0960-8966
number of pages
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