Investigator: Leo H Wang MD PhD
Category: Research - Clinical
Due to the unexpected burden of the Fulcrum ReDUX4 study and the shuttering of operations due to COVID, the neuromuscle clinical research trial unit is needing to find more salary support for the clinical research apparatus. Having $20,000 to supplement the clinical research operations would allow us to dedicate almost all of our one research coordinator time to FSHD. It will allow us to maintain clinical trial support in this uncertain time.
The research coordinator is involved with efforts for >40 FSHD affected individuals across 6 studies. Due to COVID-19 the operations have stalled and have impacted salary support. This grant award would align well with Friends Give Big vision of this year and help keep the specialized skill set that the coordinator has gained working on FSHD clinical trials. Additionally, Fulcrum's statement regarding the ReDUX4 study includes the option for remote patient monitoring. This suggests that new workflow and processes may need to be implemented requiring unconventional methods for this trial. In such a case, this grant could help supplement the new coordination efforts.