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sialic_trials [2012/05/24 20:15]
kam created
sialic_trials [2012/05/24 20:19]
kam [HIBM Sialic Acid Trial Recruitment]
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 +====== Ultragenyx-HIBM Sialic Acid Trial Phase IRecruitment ======
 +{{:​ux001_cl101_phase_1_online_ad_w_irb_changes_2011jul20_2_.jpg?​200 |}}
 +**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.” ​
 +To obtain testing at no cost, patients should contact their doctor and ask them to order sample collection kits from Ultragenyx for testing. ​  
 +* * * *  ​
 +Contacts: \\
 +To order test collection kit; John Ditton\\ ​ \\
 +To learn more about the Clinical Trials; Mari Maurer, RN, BSN\\ ​ \\
 +Phase 1 Trial Site Contacts: \\
 +Clinilabs, Inc.\\
 +423 W. 55th Street, 4th Floor\\
 +New York, NY 10019\\ \\\\
 +West Coast Clinical Trials\\
 +714-668-1500 ext 4009\\
 +3545 Howard Way, Suite 100\\
 +Costa Mesa, Ca. 92626\\\\\\
 +**Ultragenyx PDF Press Release** \\
 +\\ \\