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sialic_trials [2012/05/24 20:19]
kam [HIBM Sialic Acid Trial Recruitment]
sialic_trials [2014/05/04 17:38] (current)
Line 19: Line 19:
 Study Contact; Russ Byrns  \\ Study Contact; Russ Byrns  \\
 Study Coordinator ​ \\ Study Coordinator ​ \\
 +310-825-3264 \\
 RByrns@mednet.ucla.edu ​ \\ RByrns@mednet.ucla.edu ​ \\
    
Line 27: Line 28:
 212-263-8344 \\ 212-263-8344 \\
 Pankaj.patel@nyumc.org \\  Pankaj.patel@nyumc.org \\ 
 +
 +Hadassah University Hospital \\
 +Jerusalem, Israel, 91120 \\
 +Principal Investigator:​ Yoseph Caraco, MD   \\
 +Contact: Hannah Drory, BN, MN     \\
 +972-2-6779398 ​    \\
 +hannahd@hadassah.org.il ​   ​
 + 
  
 To be eligible, patients must be between 18 and 65 years of age, must have a documented diagnosis of GNE myopathy (HIBM), must be able to walk 20 meters independently (may use orthotics and assistive devices), must be able to provide reproducible force in bilateral elbow flexors and knee extensors during hand-held dynamometry testing, and must be willing and able to comply with all study procedures including fine needle muscle biopsies of the upper and lower extremities at Baseline and 24 and 48 weeks. ​ \\ To be eligible, patients must be between 18 and 65 years of age, must have a documented diagnosis of GNE myopathy (HIBM), must be able to walk 20 meters independently (may use orthotics and assistive devices), must be able to provide reproducible force in bilateral elbow flexors and knee extensors during hand-held dynamometry testing, and must be willing and able to comply with all study procedures including fine needle muscle biopsies of the upper and lower extremities at Baseline and 24 and 48 weeks. ​ \\
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   * Medication history   * Medication history
   * Office notes from last office visit with current physician   * Office notes from last office visit with current physician
- 
 ====== Natural History Study ====== ====== Natural History Study ======