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Post by Mirek on Feb 24, 2007 19:26:34 GMT -5
In these days is finished register of czech patients: dystrofie.registry.cz This register is used also for patients from Slovakia and can be easily extended for other countries. By information from prof Straub this register will be integrated to the TREAT-NMD project. For usage in other countries is needed registration for one or more responsible physician which will feed in data via IE. For registration as well as other informatin and CD with detail description please contact project Manager: Petr BRABEC, MSc., brabec@iba.muni.cz Advantages of this register: 1. there is only 1 responsible person which can fill in data 2. allows parents/patients to check all their data 3. allows store data from follow-up examinations, can be evaluated evolution of basic parameters like CK, ALT, AST, ... 3. allows registration of carriers 4. contains search tool which allows researchers developing drug for DMD to find suitable patients based on mutation, age, and some other parameters 5. register is in compliance with EU rules 6. register was made by proffesionals from Institute of Biostatistics and Analyses, which make registers for big pharmaceutical companies: www.iba.muni.cz/index-en.phpMirek
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