European Commission Approves QALSODY® for the Treatment of SOD1-ALS
The approval is based on the totality of evidence, including the targeted mechanism of action, biomarker, and clinical data. Qalsody® is the first treatment approved in the European Union to target a genetic cause of ALS.
The ALS Association Joins the National Institutes of Health, Food and Drug Administration, and 13 Other Private Partners to Accelerate ALS Diagnosis and Treatment
The Accelerating Medicines Partnership® in ALS will create the largest open data platform for ALS research and help enable discovery and development of diagnostic tools, biomarkers, and better treatments. The initiative is a component of the Accelerating Access to Critical Therapies for ALS Act, signed into law by President Biden in December 2021.
ALS Nexus: Preventing ALS and Its Harms
Finding new treatments and a cure are a key part of our mission; however, to truly make ALS a livable disease, advancing the science of prevention is critical. We are thrilled to announce that one of the leading researchers working to better understand what is going on at the earliest stages of the disease, Dr. Michael Benatar, will be joining us at ALS Nexus in July to talk about this very important work.
PrimeC Slows Loss for Function for People at High-Risk of Rapid ALS Progression Based on New Results from PARADIGM Clinical Trial
Trial participants considered to be at “high risk” experienced a 43% slower rate of progression after six months when given PrimeC compared with placebo. In addition, those who were newly diagnosed had a 52% slower rate of progression. However, this trial was designed to assess safety, not efficacy, so these results are most beneficial to help guide the design of the next phase of clinical testing.
Biogen, Ionis to Stop Developing BIIB105 Based on Top-Line Phase 1/2 Study Results
During the six-month treatment period, BIIB105 did not reduce levels of neurofilament light chain (NfL), indicating treatment did not slow neurodegeneration or neuronal damage. Treatment with BIIB105 also did not impact function, breathing, or strength.
More News:
- ALS Association–Focused Ultrasound Foundation Award Advances Use of Focused Ultrasound Technology in ALS Treatment
- ALS Prevention Researcher Honored with Prestigious Sheila Essey Award
- HEALEY ALS Platform Trial Completes Enrollment for Regimen G Evaluating DNL343
- Analysis Links Epigenetic Changes to ALS Progression
- Researchers Propose New Measure of ALS Disease Severity
- Study Finds Living in Rural Areas Can Significantly Delay ALS Diagnoses
ALS Focus: Clinical Trials and Treatment Needs Survey
Tomorrow is the last day for people living with ALS and current and past caregivers to complete the ALS Focus survey on clinical trials and treatment needs. Responses will help researchers, drug developers, and policymakers better understand the needs and desires of the ALS community to shape future research efforts. No experience with clinical trials or drug treatments is necessary to participate.
CLICK HERE to learn more or take part in the survey.
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Clinical Trials
We are partnering with myTomorrows to help people living with ALS and their loved ones identify and understand all available clinical trial options. Navigators also provide support throughout the enrollment process. Visit the myTomorrow’s website to learn more.
The National ALS Registry
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.
Webinars
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 details about current ALS research, our programs and awards, and the projects we fund, visit als.org/research.
Stay up to date with the latest news in ALS care and research by signing up for our e-newsletters, Care Matters and Research 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 communications@als.org.
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