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research:clinical_trials [2011/07/25 21:03]
kam [IVIG Trial]
research:clinical_trials [2014/05/04 17:38] (current)
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 ===== Sialic Acid (Phase 1) Trial ===== ===== Sialic Acid (Phase 1) Trial =====
  
-Ultragenyx Pharmaceutical Announces the Start of a Phase 1 Clinical Trial for Hereditary Inclusion Body Myopathy (HIBM) - also known as Nonaka Myopathy or Distal Myopathy with Rimmed Vacuoles (DMRV) +**Ultragenyx Pharmaceutical Announces the Start of a Phase 1 Clinical Trial for Hereditary Inclusion Body Myopathy (HIBM) - also known as Nonaka Myopathy or Distal Myopathy with Rimmed Vacuoles (DMRV)**  
-(Novato, CA, July 20, 2011) – Ultragenyx Pharmaceutical has announced that recruitment has begun for a first clinical study for HIBM patients. To be eligible, patients need to have their HIBM diagnosis confirmed with a genetic test. This first study is a short study to see how the investigational drug circulates in the body. +  
-“People with this rare disorder previously had no compelling reason to undergo genetic testing to understand their genetic mutation or to obtain a definitive diagnosis,​” said Emil Kakkis, MD, PhD, President and CEO of Ultragenyx. “As clinical trials are initiated patients will need a documented diagnosis of HIBM to be eligible, so we are helping them to get genetic testing.” +(Novato, CA, July 20, 2011) -- Ultragenyx Pharmaceutical has announced that recruitment has begun for a first clinical study for HIBM patients. ​ To be eligible, patients need to have their HIBM diagnosis confirmed with a genetic test.   ​This first study is a short study to see how the investigational drug circulates in the body.  
-To obtain testing at no cost, patients should contact their doctor and ask them to order sample collection kits from Ultragenyx for testing. * * * * +  
-Contacts:  +“People with this rare disorder previously had no compelling reason to undergo genetic testing to understand their genetic mutation or to obtain a definitive diagnosis,​” said Emil Kakkis, MD, PhD, President and CEO of Ultragenyx. ​ “As clinical trials are initiated patients will need a documented diagnosis of HIBM to be eligible, so we are helping them to get genetic testing.” ​ 
-To order test collection kit; John Ditton +  
-jditton@ultragenyx.com  +To obtain testing at no cost, patients should contact their doctor and ask them to order sample collection kits from Ultragenyx for testing. ​   
-To learn more about the Clinical Trials; Mari Maurer, RN, BSN +* * * *   
-mmaurer@ultragenyx.com  +  
-Phase 1 Trial Site Contacts:  +Contacts: ​\\ 
-Clinilabs, Inc. +To order test collection kit; John Ditton\\ 
-212-994-4567 +jditton@ultragenyx.com ​ \\ 
-423 W. 55th Street, 4th Floor +To learn more about the Clinical Trials; Mari Maurer, RN, BSN\\ mmaurer@ultragenyx.com ​ \\ 
-New York, NY 10019 + 
-participate@clinilabs.com  +Phase 1 Trial Site Contacts: ​\\ 
-www.clinilabs.com + 
-West Coast Clinical Trials +Clinilabs, Inc.\\ 
-714-668-1500 ext 4009 +212-994-4567\\ 
-3545 Howard Way, Suite 100 +423 W. 55th Street, 4th Floor\\ 
-Costa Mesa, Ca. 92626 +New York, NY 10019\\ 
-ptinfo@wcct.com +participate@clinilabs.com ​\\ 
-www.wcct.com +www.clinilabs.com\\ 
-Ultragenyx PDF Press Release  + 
-ux001_cl101_phase_1_online_ad_w_irb_changes_2011jul20_2_.pdf+West Coast Clinical Trials\\ 
 +714-668-1500 ext 4009\\ 
 +3545 Howard Way, Suite 100\\ 
 +Costa Mesa, Ca. 92626\\ 
 +ptinfo@wcct.com\\ 
 +www.wcct.com\\ 
 + 
 + 
 +**Ultragenyx PDF Press Release** \\ 
 +{{:ux001_cl101_phase_1_online_ad_w_irb_changes_2011jul20_2_.pdf|}} 
 + 
 + 
  
 ===== IVIG Trial ===== ===== IVIG Trial =====