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research:clinical_trials [2011/05/11 04:14] – external edit 127.0.0.1 | research:clinical_trials [2011/07/25 21:03] – [IVIG Trial] kam | ||
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If you are a patient or a doctor interested in finding out about active and upcoming clinical trials on HIBM, please [[about_arm: | If you are a patient or a doctor interested in finding out about active and upcoming clinical trials on HIBM, please [[about_arm: | ||
+ | |||
+ | ===== 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, | ||
+ | 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 | ||
===== IVIG Trial ===== | ===== IVIG Trial ===== |