台灣法布瑞氏症臨床試驗聯盟

Taiwan Clinical Trial Consortium in Fabry Disease

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Coordinating Research Center and Network for Fabry Disease in Taiwan

中文 | English | 2013年03月25日

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Newborn screening of Fabry disease in Taiwan revealed a surprisingly high incidence of the cardiac variant GLA mutation, IVS4+919G>A (~1 in 1,500-1,600 males and ~1 in 750-800 females). It is estimated that at least 20,000 individuals carrying this mutation in Taiwan. Further family studies of the newborns having IVS4+919G>A revealed 82 adults with this mutations, and 37 of whom have already developed hypertrophic cardiomyopathy. The preliminary data by screening the patients with hypertrophic cardiomyopathy for Fabry disease in our Cardiac Clinics also showed that approximately 10 % of adults with HCM were caused by Fabry disease. These results strongly suggest that Fabry disease represent a major health issue in Taiwan, especially for mid aged adults. The annual cost of the enzyme replacement therapy of Fabry disease is very high, around 10 million NT dollars per person. In our estimation, at least 4000 patients who have already had disease onset may need ERT. It will cost at least 40 billion NT dollar per year in ERT in Taiwan. Therefore, it is very important to find other possible alternative therapies to reduce the cost for treatment.

“Taiwan Clinical Trial Consortium in Fabry Disease” is established to solve the foregoing problems. The consortium is comprised of Confirmatory Diagnosis Center, Translational Research Center, Data Management Center, Clinical Research Center and Bio-sample Bank and we strive for excellence in achieving the following objectives:

1.Set up the Taiwan Clinical Trial Consortium in Fabry Disease as one of the best Fabry disease clinical study groups in the world.

2.To help Taiwan or international medical device companies to develop the reliable biomarkers or new diagnosis methods of Fabry disease.

3.Support investigator initiated studies for novel variant types of Fabry disease.

4.To attract international  pharmaceutical companies to perform their Fabry disease clinical trials on led by the principal investigators in Taiwan.

5.To help Taiwan or international pharmaceutical companies to initiate the Fabry disease new therapeutic drugs development.

Links

Members

Taipei veterans general hospital

National Research Program For Biopharmaceuticals

Web Services for genetic disease

Translational Resource Center for Genomic Medicine

National Taiwan University Hospital

Shin Kong Wu Ho-Su Memorial Hospital

Taipei Institute of Pathology

China Medical University Hospital

Taichung Veterans General Hospital

National Cheng Kung University Hospital

Kaohsiung Veterans General Hospital

Kaohsiung Medical University Chung-Ho Memorial Hospital

Budohist Tzu Chi General Hospital

The Chinese Foundation of Health

  • 聯盟顧問(依英文字母排序)

Fang-Yue Lin 林芳郁(台北榮總)
Kung-Yee Liang 梁賡義(陽明大學)
Yuan-Taong Chen 陳垣崇(中央研究院)

  • 計畫(共同)主持人員(依英文字母排序)

Chih-Chan Lin 林志展(成功大學)
Chih-Chao Yang 楊智超(台大醫院)
Ching-Yuang Lin 林清淵(中國醫藥大學附設醫院)
Chin-Wen Chi 戚謹文(台北榮總)
Chuan-Ji Jiang 江傳箕(保健基金會)
Dau-Ming Niu 牛道明(台北榮總)
Fuu-Jen Tsai 蔡輔仁(中國醫藥大學附設醫院)
Jan-Gowth Chang 張建國(中國醫藥大學中西醫結合研究所)
Jaw-Ching Wu 吳肇卿(台北榮總)
Jer-Yuarn Wu 鄔哲源(中央研究院)
Jyh-Hong Chen 陳志鴻(成功大學附設醫院)
Kai-Sheng Hsieh 謝凱生(高雄榮總)
Mei-Chyn Chao 趙美琴(高雄醫學大學附設醫院)
Pao-Chin Chiu 邱寶琴(高雄榮總)
Shao-yin Chu 朱紹盈(花蓮慈濟)
Shih-Ann Chen 陳適安(台北榮總)
Shio-Jean Lin 林秀娟(成功大學)
Shu-Chi Mu 穆淑琪(新光醫院)
Shuu-Jiun Wang 王署君(台北榮總)
Tsuo-Hung Lan 藍祚鴻(台北榮總)
Ueng-Cheng Yang 楊永正(陽明大學)
Wen-Chung Yu 余文鐘(台北榮總)
Yi-Ning Su 蘇怡寧(台大醫院)
Yun-Ching Fu 傅雲慶(台中榮總)
Yu-Yuan Ko 柯瑜媛(彰化基督教醫院)
 

  • 工作推動小組委員會(依英文字母排序)

Chih-Chao Yang 楊智超(台大醫院)
Chin-Wen Chi 戚謹文(台北榮總)
Dau-Ming Niu 牛道明(台北榮總)
Jan-Gowth Chang 張建國(中國醫藥大學中西醫結合研究所)
Jaw-Ching Wu 吳肇卿(台北榮總)
Long-Sun Ro 羅榮昇(林口長庚)
Shih-Feng Tsai 蔡世峰(國家衛生研究院)
Shiu-Feng Kathy Huang 黃秀芬(國家衛生研究院)
Tsuo-Hung Lan 藍祚鴻(台北榮總)
Yi-Ning Su 蘇怡寧(台大醫院)

 

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上次修改此網站的日期: 2013年03月25日