中文 | English | 2012年10月02日

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 “Taiwan Clinical Trial Consortium in Fabry Disease” aims for development of a coordinative clinical research network for Fabry disease in Taiwan incorporating clinicians, basic scientists, pathologists, statisticians, epidemiologists and managers, through clinical diagnosis, treatment and long term follow ups to provide clinical data of Fabry disease patients with IVS4+919G>A for investigators. Specifically, we have a main office, Bio-sample Bank, Translational Research Center, Clinical Research Centre, and Confirmatory Diagnosis Centre to provide a platform for facilitating coordinative network for clinical trials, and drug development.

     Since Fabry cardiac variant IVS4+919G>A is frequently found in Hokkien originated Chinese, but large scale reaserach has not yet been executed. If the correlation of this mutation with the risk in cardiac disorder has not been studied over a long period time, it is likely to miss the opportunity for early intervention. Besides, the current treatment method for Fabry disease is limited to enzyme replacement therapy (ERT), and the cost of which is very high. Based on the above mentioned reasons, there is an urgent need to develop alternative treatment which is both cheaper and safer compared to ERT. However, as the time for Fabry disease related research is rather short in Taiwan, in comparison with advanced countries like Eruope and U.S. with more than 40 years experiences, a new platform which provides service in collecting clinical samples and data is very important for facilitating collaborative network research. Several Fabry disease related associations and pharmaceutical companies (German, France, United States, Japan,etc) have shown very high interest in collaboration with the studies of this  Cardiac Variant mutation. Therefore, it is our hope to use these resources provide by NRPB to set up the Taiwan Clinical Trial Consortium in Fabry Disease, in order to collect and analyze the related clinical resources from all Fabry patients in Taiwan in the shortest amount of time, so as to develop novel prevention, and treatment strategies and medicines, which in turn will reduce the government’s high cost subsidize. This also set an example for other types of rare disease research, which can propel Taiwan into a leading country in the field of rare disease treatment, and will be one of the marvelous achievements under NRPB.

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Lastest update time2012年10月02日