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Updates on Tofersen Trials for SOD1-MND

Updates on Tofersen Trials for SOD1-MND

Reading Time: 6 minutes Global biotechnology company Biogen has announced plans to make tofersen, a potential treatment for people whose MND is believed to be driven by mutations in the SOD1 gene, available to more people on an early access programme. Biogen have also revealed that they are conducting a new Phase 3 clinical trial of tofersen in those…

Virtual Symposium: Lessons from COVID-19 Part 1 – Impact on clinical trials

Virtual Symposium: Lessons from COVID-19 Part 1 – Impact on clinical trials

Reading Time: 3 minutes This is the first in a series of three blog articles from Session 7 – Perspectives: Lessons from COVID-19 in which we heard from different speakers about how the COVID-19 pandemic has impacted their own experiences of clinical trials, research, and support within the MND community. A further blog, written by Bruce Virgo who is…

Should routine genetic testing be considered for all cases of MND?

Should routine genetic testing be considered for all cases of MND?

Reading Time: 9 minutes A paper arising from research carried out at the University of Sheffield as part of the AMBRoSIA biobank, and in collaboration with the international Project MinE gene-hunting consortium, was recently published in the Journal of Neurology, Neurosurgery and Psychiatry. Researchers propose that a test for the most common MND genes could be offered to all…

Clinical Trials (Part 1) – Platform Presentations: Highlights from Perth

Clinical Trials (Part 1) – Platform Presentations: Highlights from Perth

Reading Time: 4 minutes This blog is part of the ‘Highlights from Perth’ collection of articles, where you can read about the content of some of the talks and posters presented at the 30th International Symposium on ALS/MND. All presentations have a code beginning with ‘C’ followed by a number (e.g. C50). This will help you locate the specific…

ALSUntangled – untangling the mysteries of alternative and off-label treatments

ALSUntangled – untangling the mysteries of alternative and off-label treatments

Reading Time: 5 minutes There are literally thousands of websites on the internet that make claims about amazing alternative or off-label treatments (AOTs) and even cures for MND but with little or no scientific evidence to back these claims up. This presents a real problem for people living with the disease who may want to try them. Are they…