All data from 1,100+ Answer ALS participants, including ALS TDI’s ARC study data, are now harmonized and accessible via the Neuromine Data Portal, forming the world’s largest open ALS research resource to accelerate discoveries.
NEW ORLEANS, Nov. 3, 2025 /PRNewswire/ — Answer ALS today announced the full release of its comprehensive ALS clinical and multi-omics dataset, marking the culmination of a multi-year research program and a groundbreaking collaboration with the ALS Therapy Development Institute (ALS TDI). For the first time, the complete data from over 1,100 individuals who participated in the Answer ALS study, along with ALS TDI’s ALS Research Collaborative (ARC) study data, are available in a unified, cloud-based platform. This milestone builds upon the already unprecedented resource to scientists worldwide, integrating two of the largest ALS datasets into the Neuromine Data Portal. Researchers can now interrogate over 150 terabytes of harmonized data spanning more than 2,500 ALS patient profiles to accelerate the quest for new therapies and insights into amyotrophic lateral sclerosis (ALS).
This comprehensive dataset encompasses multiple layers of “omics” data for each patient, all rigorously processed to ensure the highest quality. “We’ve been building and refining the Answer ALS multi-omic dataset for years, now with over 1,100 deeply characterized participants,” said Terri Thompson, Ph.D., Program Director of Data Management at Answer ALS. “It’s a living resource that we’re constantly updating, ensuring the data is of the utmost quality and reliability. This is the most comprehensive and actively evolving ALS research dataset available, and it’s already accelerating discoveries in labs around the world.”
The Answer ALS team collected and analyzed a rich array of biological data from each participant, including genomics: whole-genome DNA sequencing data; transcriptomics: gene expression profiles (RNA sequencing); proteomics: protein expression and biomarker data; epigenomics: epigenetic markers (e.g., DNA methylation); and clinical data: detailed clinical histories and outcomes.
These data are linked with patient-derived biosamples and induced pluripotent stem cell (iPSC) lines, offering scientists a 360-degree view of each patient’s ALS biology. All information is openly accessible through Neuromine, Answer ALS’s cloud-based data portal, which now brings together multi-omics and clinical datasets from both Answer ALS and ALS TDI’s ARC program.
The integration of ALS TDI’s ARC study data is transformative, nearly doubling the amount of data available through Neuromine. “This full data release is a game-changer for the ALS research community,” said Fernando G. Vieira, M.D., CEO and Chief Scientific Officer at ALS TDI. “By uniting ALS TDI’s ongoing ARC study data with Answer ALS’s comprehensive dataset, we’ve created a resource of unmatched scale for ALS research. This combined dataset will empower scientists to uncover new disease patterns and identify therapeutic targets much faster than ever before. And because the ARC study is ongoing, we will continue to add new data, ensuring Neuromine remains an ever-growing engine for discovery.” The ARC program has been collecting vital clinical and biological data from people with ALS for over eight years, and its continuing contributions will further expand the Neuromine repository as new participants enroll.
Early open access to Answer ALS data has already catalyzed hundreds of research efforts around the world. Since Neuromine’s initial launch in 2021, over 500 independent ALS research projects have been initiated and dozens of scientific papers published using Answer ALS’s freely accessible data.
Investigators across academia and industry are mining the combined dataset to identify ALS subtypes, discover biomarkers, and test novel hypotheses at a scale never before possible.
“I’ve always said ALS breakthroughs fall like dominoes,” said Ed Rapp, Answer ALS Advisory Board Chair and person living with ALS. “For years, the missing domino was big data. Today, with the latest Neuromine data release, we are handing pharma and researchers the deepest real-world insights yet from people diagnosed with ALS like me.
“As someone who’s been living with ALS for 10 years, watching my own data fuel scientists across the globe is exactly why I gave my blood, time, and resources all these years. They aren’t just numbers, they’re us. Every time someone uncovers a new clue in this dataset, I feel it. We’re not waiting for hope, we’re building it, one release at a time. We will not rest until we materially alter the course of the disease.”
For scientists, clinicians, and researchers looking to leverage this resource, Answer ALS will host a free webinar, “Mastering Neuromine: Exploring the World’s Largest Collaborative ALS Dataset,” on December 11, 2025. This live demo and tutorial will guide users on how to navigate the Neuromine portal and maximize its potential for ALS research. To register, please visit answerals.org/neuromine-webinar.
For more information about accessing the Neuromine Data Portal or collaborating with Answer ALS, please contact Clare Durrett at [email protected].
About Answer ALS
Answer ALS is one of the most comprehensive ALS research consortia in history, producing more ALS data and biological samples than had ever been amassed, while openly sharing with the global research community, through the Neuromine data repository. These data and samples are used to investigate the unique pathways of each variation of ALS and begin to develop and test the right treatments or cures. Answer ALS is an unprecedented approach to understanding and defeating the disease.
Headquartered in New Orleans and Washington, D.C., Answer ALS stands at the forefront of global efforts to eradicate the disease, supported by research partners and advocates worldwide.
For more information, visit us at answerals.org, LinkedIn, X, Facebook and Instagram.
Media Contacts:
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Answer ALS
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