Posted by Friends of FSH Research on Jun 4, 2021
Report by Dr. Rabi Tawil
See grant Optimizing the Utility of the National Registry for FSHD Research and Trial Recruitment
A significant percentage of individuals with FSHD in the National FSHD Registry have not had genetic testing to confirm their diagnosis. Genetic confirmation is important for the value of the data in the registry but most importantly, all future clinical trials will require that individuals interested in joining a drug trial be genetically confirmed. We have so far been able to recruit 77 patients, 66 of whom have been genetically tested and the remaining individuals are in the process of getting blood samples drawn for testing. Another 7 individuals are in the process of signing the consent form making a total of 84. We are still shy of our target of 90-120 subjects and expect to reach our goal in the upcoming year.
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