{"event":"als-research-tracker","title":"ALS research tracker: treatments, trials and milestones","state":"developing","updated":"2026-10-11T00:00:00.000Z","entries":[{"id":"1ww8qa1","at":"2026-10-01T00:00:00.000Z","title":"ALS Network announces the death of patient-advocate Brooke Eby, aged 37","status":"confirmed","cites":[{"id":"health-neuro-eby-death","n":17,"url":"https://alsnetwork.org/remembering-brooke-eby/","publisher":"ALS Network","short":"ALS Network"}]},{"id":"15r4cfd","at":"2026-09-22T00:00:00.000Z","title":"Ulefnersen meets phase 3 primary endpoint in FUS-ALS, companies report","status":"confirmed","body":"Otsuka and Ionis reported p=0.0005 on a joint-rank measure of function and survival through day 505; full data are to be presented and published later.","cites":[{"id":"health-neuro-fusion-topline","n":2,"url":"https://www.otsuka.co.jp/en/company/newsreleases/2026/20260922_1.html","publisher":"Otsuka Pharmaceutical","short":"Otsuka Pharmaceutical"},{"id":"health-neuro-fusion-secondary-safety","n":8,"url":"https://www.otsuka.co.jp/en/company/newsreleases/2026/20260922_1.html","publisher":"Otsuka Pharmaceutical","short":"Otsuka Pharmaceutical"},{"id":"health-neuro-fusion-alsa-statement","n":11,"url":"https://www.biospace.com/press-releases/als-association-statement-on-positive-phase-3-results-for-ulefnersen-in-fus-als","publisher":"The ALS Association (press release via PR Newswire)","short":"The ALS Association"}]},{"id":"1f654m4","at":"2026-06-17T00:00:00.000Z","title":"FUSION trial reaches primary completion","status":"confirmed","cites":[{"id":"health-neuro-fusion-design","n":9,"url":"https://clinicaltrials.gov/study/NCT04768972","publisher":"ClinicalTrials.gov (U.S. National Library of Medicine)","short":"ClinicalTrials.gov"}]},{"id":"55nhjs","at":"2026-03-26T00:00:00.000Z","title":"ALS Network names Brooke Eby its 2026 Advocate of the Year","status":"confirmed","cites":[{"id":"health-neuro-eby-award","n":25,"url":"https://alsnetwork.org/remembering-brooke-eby/","publisher":"ALS Network","short":"ALS Network"},{"id":"health-neuro-eby-alstogether","n":18,"url":"https://alsnetwork.org/brooke-eby-honored-with-advocate-of-the-year-award/","publisher":"ALS Network","short":"ALS Network"}]},{"id":"1k8p3pr","at":"2024-08-15T00:00:00.000Z","title":"Speech neuroprosthesis lets a man with ALS converse at 97.5% accuracy (NEJM)","status":"confirmed","cites":[{"id":"neurotech-card-2024-results","n":16,"url":"https://doi.org/10.1056/NEJMoa2314132","publisher":"New England Journal of Medicine","short":"New England Journal…"},{"id":"neurotech-card-2024-setup","n":24,"url":"https://doi.org/10.1056/NEJMoa2314132","publisher":"New England Journal of Medicine","short":"New England Journal…"}]},{"id":"1xhctxk","at":"2024-05-29T00:00:00.000Z","title":"EU authorises tofersen under exceptional circumstances","status":"confirmed","cites":[{"id":"health-neuro-tofersen-ema","n":15,"url":"https://www.ema.europa.eu/en/medicines/human/EPAR/qalsody","publisher":"European Medicines Agency","short":"European Medicines Agency"}]},{"id":"1biqgmz","at":"2023-04-25T00:00:00.000Z","title":"FDA grants accelerated approval to tofersen (Qalsody) for SOD1-ALS","status":"confirmed","body":"The approval rested on reduced plasma neurofilament light; a confirmatory trial in presymptomatic carriers continues.","cites":[{"id":"health-neuro-tofersen-fda-approval","n":1,"url":"https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-amyotrophic-lateral-sclerosis-associated-mutation-sod1-gene","publisher":"U.S. Food and Drug Administration","short":"U.S. Food and Drug…"},{"id":"health-neuro-tofersen-mechanism","n":7,"url":"https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-amyotrophic-lateral-sclerosis-associated-mutation-sod1-gene","publisher":"U.S. Food and Drug Administration","short":"U.S. Food and Drug…"}]},{"id":"i6l8tl","at":"2022-09-22T00:00:00.000Z","title":"Tofersen phase 3 VALOR results published (NEJM)","status":"confirmed","body":"Tofersen lowered SOD1 and neurofilament light but missed its primary functional endpoint at 28 weeks.","cites":[{"id":"health-neuro-tofersen-valor","n":13,"url":"https://pubmed.ncbi.nlm.nih.gov/36129998/","publisher":"New England Journal of Medicine (via PubMed)","short":"New England Journal…"},{"id":"health-neuro-tofersen-ole","n":23,"url":"https://pubmed.ncbi.nlm.nih.gov/36129998/","publisher":"New England Journal of Medicine (via PubMed)","short":"New England Journal…"}]},{"id":"2u82cz","at":"2021-06-14T00:00:00.000Z","title":"FUSION phase 1-3 trial of ulefnersen in FUS-ALS begins","status":"confirmed","cites":[{"id":"health-neuro-fusion-design","n":9,"url":"https://clinicaltrials.gov/study/NCT04768972","publisher":"ClinicalTrials.gov (U.S. National Library of Medicine)","short":"ClinicalTrials.gov"}]},{"id":"18alkn","at":"2017-05-15T00:00:00.000Z","title":"Edaravone phase 3 trial in selected early-stage patients published (Lancet Neurology)","status":"confirmed","body":"Functional decline over 24 weeks was smaller with edaravone than placebo in a subgroup defined by an earlier post-hoc analysis.","cites":[{"id":"health-neuro-edaravone-trial","n":21,"url":"https://pubmed.ncbi.nlm.nih.gov/28522181/","publisher":"The Lancet Neurology (via PubMed)","short":"The Lancet Neurology"},{"id":"health-neuro-edaravone-subset","n":22,"url":"https://pubmed.ncbi.nlm.nih.gov/28522181/","publisher":"The Lancet Neurology (via PubMed)","short":"The Lancet Neurology"}]},{"id":"derpjf","at":"2012-03-14T00:00:00.000Z","title":"Cochrane review finds riluzole probably adds two to three months of median survival","status":"confirmed","body":"The review pooled randomised trials with 974 riluzole-treated and 503 placebo-treated patients.","cites":[{"id":"health-neuro-riluzole-cochrane","n":19,"url":"https://pubmed.ncbi.nlm.nih.gov/22419278/","publisher":"Cochrane Database of Systematic Reviews (via PubMed)","short":"Cochrane Database…"},{"id":"health-neuro-riluzole-cochrane-detail","n":20,"url":"https://pubmed.ncbi.nlm.nih.gov/22419278/","publisher":"Cochrane Database of Systematic Reviews (via PubMed)","short":"Cochrane Database…"}]}]}