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.
http://www.ultragenyx.com/ht/a/GetDocumentAction/i/45418
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 —
https://clinicaltrials.gov/ct2/show/NCT02377921?term=hibm&rank=4
Contacts
| Contact: Kim Mooney | 415-483-8872 | kmooney@ultragenyx.com |
| United States, California | |
| University of California, Irvine | Not yet recruiting |
| Irvine, California, United States, 92697 | |
| Contact: Brian Minton 714-456-8520 bminton@uci.edu | |
| Principal Investigator: Tahseen Mozaffar, MD | |
| Canada, Ontario | |
| McMaster University | Not 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 Hospitals | Not 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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