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research:clinical_trials [2011/05/11 04:14] – external edit 127.0.0.1research:clinical_trials [2011/07/25 21:03] – [Sialic Acid (Phase 1) Trial] kam
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 ====== Clinical Trials ====== ====== Clinical Trials ======
 If you are a patient or a doctor interested in finding out about active and upcoming clinical trials on HIBM, please [[about_arm:contact_us |contact us]].  We will include your details in our database and send you pertinent information. If you are a patient or a doctor interested in finding out about active and upcoming clinical trials on HIBM, please [[about_arm:contact_us |contact us]].  We will include your details in our database and send you pertinent information.
 +
 +
 +===== 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)** 
 + 
 +(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\\
 +jditton@ultragenyx.com  \\
 +To learn more about the Clinical Trials; Mari Maurer, RN, BSN\\ mmaurer@ultragenyx.com  \\
 +
 +Phase 1 Trial Site Contacts: \\
 +
 +Clinilabs, Inc.\\
 +212-994-4567\\
 +423 W. 55th Street, 4th Floor\\
 +New York, NY 10019\\
 +participate@clinilabs.com \\
 +www.clinilabs.com\\
 +
 +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|}}
 +
 +