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Ultragenyx Announces Global Phase 3 Study of Aceneuramic Acid (Sialic Acid) for GNE Myopathy

Ultragenyx is launching Phase 3 trial of Sialic Acid tablets to treat GNE myopathy.  The name Sialic Acid  has now been changed to "aceneuramic acid" one of its multiple chemical names. Participants will be either on a placebo or on aceneuramic acid extended release  tablets(Ace-ER). This study is designed to recruit eighty patients worldwide.  Clinicaltrials.gov site as of this blog states "not  yet recruiting", however patients who are interested in participating may want to call the site in their respective country. The countries listed are the United Kingdom, United States, Canada.  I also see France, Italy, Israel,and Bulgaria I am unsure of the status of these countries.  Please refer to the  links for this posting from Ultragenyx, and the clinicaltrials.gov below.  Please feel free to contact me if you have any questions or need assistance.


Contact Ultragenyx Pharmaceutical Inc. Investors & Media Robert Anstey 844-758-7273 Ultragenyx Announces First Patient Enrolled in Global Phase 3 Study of Aceneuramic Acid (Sialic Acid) Extended Release in GNE Myopathy Novato, CA — May 28, 2015 —

Contact: Kim Mooney415-483-8872kmooney@ultragenyx.com
United States, California
University of California, IrvineNot yet recruiting
Irvine, California, United States, 92697
Contact: Brian Minton    714-456-8520    bminton@uci.edu   
Principal Investigator: Tahseen Mozaffar, MD         
Canada, Ontario
McMaster UniversityNot yet recruiting
Hamilton, Ontario, Canada, L8N3Z5
Contact: Erin Hatcher    905-521-2100 x 76929    hatchere@hhsc.ca   
Principal Investigator: Mark Tarnopolsky, MD         
United Kingdom
The Newcastle upon Tyne HospitalsNot yet recruiting
Newcastle Upon Tyne, Tyne and Wear, United Kingdom, NE1 4LP
Contact: Oksana Pogoryelova, PhD    +44 (0) 191 2418640    Oksana.Pogoryelova@newcastle.ac.uk   
Principal Investigator: Hanns Lochmuller, MD     

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