#United States #New Orleans #ALS #Answer ALS #Neuromine

Answer ALS Releases Comprehensive Dataset for ALS Research

On November 3, 2025, Answer ALS made a significant announcement regarding the full release of an extensive dataset focused on ALS (amyotrophic lateral sclerosis), which is now available on the Neuromine Data Portal. This comprehensive dataset marks the culmination of years of research and collaboration with the ALS Therapy Development Institute (ALS TDI). With complete data from over 1,100 participants, along with additional data from ALS TDI's ALS Research Collaborative (ARC) study, the initiative is set to transform ALS research worldwide.

The new dataset comes as a result of meticulous data gathering and processing. It combines clinical data with multi-omics information, which includes genomics, transcriptomics, proteomics, and epigenomics—all rigorously vetted to guarantee high-quality research material. Terri Thompson, Ph.D., the Program Director of Data Management at Answer ALS, highlighted the importance of this living resource, stating that it is actively updated to maintain precision and reliability. This resource now encompasses over 150 terabytes of information across 2,500 ALS patient profiles, representing an unparalleled opportunity for researchers focused on advancing our understanding of ALS.

The integration of ALS TDI's ARC data is particularly noteworthy as it significantly increases the volume of accessible data, nearly doubling the previous database. Fernando G. Vieira, M.D., CEO and Chief Scientific Officer at ALS TDI, remarked that this union of datasets offers a unique scale for ALS research, enabling scientists to rapidly identify new patterns in the disease and potential therapeutic targets. Moreover, as the ARC study collects ongoing data, the Neuromine repository is expected to expand continuously.

The implications of this dataset are already being felt in the scientific community. Since the launch of Neuromine in 2021, it has catalyzed over 500 independent ALS research projects, leading to numerous scientific publications that utilize its openly accessible data. Investigators, both in academia and the private sector, are leveraging this expansive dataset to better understand the different subtypes of ALS, discover biomarkers, and test innovative hypotheses in a manner that was previously unattainable.

Ed Rapp, Chair of the Answer ALS Advisory Board and a person living with ALS, provided an inspirational perspective on this development. He expressed his hope for accelerated breakthroughs in ALS research, stating that the missing component had always been robust data. With the latest release, he believes researchers now have the vital insights needed to drive advancements. The personal nature of the data, which Ed emphasizes is about real individuals, underscores the urgency and importance of transforming ALS research.

In an effort to support scientists and researchers in utilizing this rich resource, Answer ALS will host a free webinar titled "Mastering Neuromine: Exploring the World's Largest Collaborative ALS Dataset" on December 11, 2025. This session aims to instruct attendees on navigating the portal effectively while highlighting the potential for ALS research.

For further information on accessing the Neuromine Data Portal or collaborating with Answer ALS, interested parties can reach out via the provided contact details.

Answer ALS stands as one of the most significant ALS research consortia in history, producing a wealth of data and biological samples that were hitherto unavailable. The organization remains committed to unraveling the complexities of ALS and accelerating the development of treatments or cures. Headquartered in New Orleans and Washington, D.C., Answer ALS is at the forefront of global initiatives aimed at eradicating this debilitating disease. Learn more at answerals.org.