The ALS Association is committed to making ALS livable for everyone, everywhere until we find a cure. This month, learn more about the progress being made through numerous ALS clinical trials.
Leveraging a $500,000 ALS Association Partnership Grant, the Digital Assessment Tools for FTD and ALS Awards will provide a total of $750,000 to support two to four projects focused on developing tools that use smartphones, wearable trackers or other devices to remotely gather data on a person’s symptoms or functional ability.
Topline results from the Phase 1b/2a FOCUS-C9 study showed that while the investigational treatment reduced a biomarker linked to the abnormal C9orf72 gene that causes ALS and FTD, these reductions were not associated with stabilization or improvement in functional outcomes, with no clinical benefit observed at 24 weeks.
Combined with Rilutek (riluzole), treatment slowed disease progression and improved lung function in people with mild or moderately severe disease. These new results from the AB10015 Phase 2/3 clinical trial were presented at the American Academy of Neurology 2023 Annual Meeting.
Radicava (edaravone) significantly prolongs long-term survival for people with ALS, according to an analysis of nearly 3,000 patients presented at the American Academy of Neurology 2023 Annual Meeting. However, it didn’t significantly slow the progression of disease symptoms.
PatientsLikeMe donated the dataset dating back to 2005 to the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database to help accelerate efforts to find a cure. PRO-ACT is funded by The ALS Association and maintained by the Neurological Clinical Research Institute at Massachusetts General Hospital.
The American Academy of Neurology hosted its 75th annual meeting last month. The meeting convened neurology experts from around the world to share the latest clinical insights and expertise in patient care.
ALS Focus allows people living with ALS, and current and former caregivers the ability to participate in research outside of clinical trials and is available to all at any stage of the disease. Your opinions matter to help strengthen care, accelerate therapy development, improve clinical trials, influence insurance coverage decisions, and more.
Register to participate in future surveys HERE, and let your voice be heard.
Clinical research is the only way that promising laboratory science can be translated into treatments and cures for ALS and other neurological diseases. People with ALS, along with family members and caregivers, are essential partners in this research. For the most accurate and up-to-date information on both federally and privately funded clinical studies focusing on ALS and other similar motor neuron diseases, visit our website.
The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. Every person living with ALS in the U.S. can take part, and there is no fee to participate.
The ALS Association partners with the Northeast ALS Consortium (NEALS) to provide educational webinars for people with ALS, caregivers, and the broader ALS community. Topics include updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments.
For more detail about current ALS research, the projects we fund, and the numerous focus areas we support, visit als.org/research.
Stay up to date with the latest ALS care news by signing up for our quarterly e-newsletter, Care Matters.
We welcome all feedback, comments and questions you may have on anything about the information provided, suggestions of topics you would like to see in future newsletters or thoughts to help us improve. Please email us at communication@als.org.