The clinical trial for sialic acid phase 2 is currently recruiting at all 3 sites in the United States and one site in Jerusalem, Israel. I have attached the link at the bottom of this blog. Please send me a comment if you are unable to access the link.
In addition, the National Institutes of Health has just listed a clinical trial for phase one of ManNAc. They are not yet recruiting for this phase. The Natural History study continues and they are still recruiting patients to participate in the study. Likewise, I have attached the links.
On a personal note. I am pleased to state that I have been screened and accepted into the clinical trial for phase 2 of sialic acid. I have been going to the UCLA site in Southern California for the study.
Sialic Acid trial phase 2:
http://clinicaltrials.gov/ct2/show/NCT01517880?term=hibm&rank=5
ManNAc announcement for phase 1:
http://clinicaltrials.gov/ct2/show/NCT01634750?term=hibm&rank=1
Natural History Study conducted by the National Institutes of Health
http://clinicaltrials.gov/ct2/show/NCT01417533?term=hibm&rank=3
This is a forum for GNE Myopathy where I discuss the challenges and insights I encounter on my journey in living with a progressively "weakening" disease. GNE Myopathy is also known as Hereditary Inclusion Body Myopathy (HIBM). I will invite others to share their stories, tips, and comments. I will discuss potential treatments, clinical trials, current research, and resources available for patients with GNE Myopathy.
tara
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