New study tracks safety of ALS drug tofersen over 7 years

This study looks at the long-term safety of the drug tofersen (Qalsody®) in people with a rare, inherited form of ALS called SOD1-ALS. Researchers will collect health information from about 125 participants in Europe and the US over at least 7 years. The main goal is to see what side effects occur, including serious ones, and to understand the participants' health over time. No new treatments are given—this is an observational study that follows patients receiving routine care.