ALS Research News from The ALS Association
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New Data Shows Relyvrio
Reduces Inflammatory Biomarkers

Data analyzed from the phase 2 CENTAUR trial showed a significant reduction in YKL-40 and C-reactive protein, but not chitinase 1, over 24 weeks, with reductions observed as early as week 12. These biomarkers have been previously shown to correlate with ALS disease progression.

Toxic Chemicals in the Air
May Increase ALS Risk

Using data from the CDC’s National ALS Registry and Biorepository, researchers found exposure to five specific chemicals used in dyes, batteries, solvents, steel, and rubber significantly increased — by three to six times — the odds of developing ALS.

Verge Genomics to Initiate
Proof-of-Concept Study of VRG50635 for ALS

The Phase 1b study will assess the safety and tolerability of escalating doses of VRG50635 in the treatment of both sporadic and familial ALS. VRG50635 is an investigational drug that inhibits the protein PIKfyve.

Initial Biomarker Data Is Insufficient
to Support Accelerated Approval of CNM-Au8, FDA Says

In a separate statement, the drug’s manufacturer Clene Nanomedicine reported positive results from a 12-month open-label extension of the treatment arm in the HEALEY ALS Platform Trial.

Researchers Use Machine Learning
to Help Predict ALS Survival

The algorithm they developed helps generate personalized survival predictions for people living with ALS based on clinical and MRI features. It was found to have an accuracy of 77% for one-year survival, 57% for two years, and 85% for three years.

More News:

Prilenia Announces Clinical Data in Support of Plans to Initiate Phase 3 Study of Pridopidine Later this Year

Positive Results Reported from Small Phase 2a Trial of IPL344

Phase 1 Trial of NX210c with Healthy Volunteers Produces ‘Promising Results’

Small Clinical Trial Suggests Transcranial Stimulation May Boost Muscle Strength, Quality of Life

Speech Accessibility Project Begins Recruiting People Living with ALS in the U.S. and Puerto Rico

ALS Progression Linked to Disruption of Mitochondria-Associated Membranes and Loss of TBK1 Activity

Study Suggests Immune Molecule May Play a Role in ALS Progression



ALS Focus

Person with ALS

Help Drive Changes in ALS Research, Policy, and Care

ALS Focus is a survey program developed by and for people living with ALS and their caregivers. Through ALS Focus research, the ALS Association scientifically measures the preferences, needs and experiences of people living with ALS and ALS caregivers to promote change in ALS research, policy, and care. All participants must be at least 18 years old, live in the United States and be able to read and understand English.

By sharing their lived experiences, ALS Focus participants can make a real difference for the ALS community. More information about ALS Focus and instructions for signing up can be found at ALSFocus.org.

Blogs

Making ALS Livable: Newly Funded Research Aims to Optimize Care and Improve Quality of Life

ALS Association Supports the Development of Four New Therapies with 2023 Clinical Trial Awards

2023: Our Year in Review

Subscribe today to follow our weekly blog and stay up to date with what’s happening in the ALS community. Visit our website HERE.

Resources

Clinical Trials

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 

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.

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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.