In light of the FDA approval of tofersen for SOD1-related ALS, what is your approach to counseling people who are presymptomatic genetic carriers of one of the monogenic ALS genes?
What do you recommend for surveillance and when to start the “three R’s” (riluzole, radicava/edaravone, and relyvrio (sodium PB/TUDCA))?
Answer from: at Academic Institution
First of all, let's emphasize that there is no standard of care for the management of presymptomatic carriers of ALS genes. In other words, there is no strong scientific evidence in humans yet, that early initiation of any ALS treatment, will delay either the onset of clinical disease, or the p...