Answer ALS speeds progress toward treatments and cures through Microsoft Azure

Professional athlete Steve Gleason played for the NFL’s New Orleans Saints, where he famously blocked a punt that led to the team’s first score after returning to their post-Hurricane Katrina home field. Then in 2011, his life changed. He was diagnosed with amyotrophic lateral sclerosis (ALS) just six weeks before learning he and his wife were going to become parents. A neurodegenerative condition that impacts an estimated 450,000 people worldwide, ALS affects nerve cells in the brain and spinal cord. People with the progressive and usually irreversible disease gradually lose muscle control, the ability to speak, and eventually the ability to breathe.  

Gleason brought the same fighting spirit and tenacity of his NFL career to the battle against ALS. He founded the nonprofit Team Gleason, which provides assistive technology, equipment, and care services to people living with ALS. Then in 2013 during a conference hosted by Team Gleason, he challenged attendees to rethink their approach to investigating the condition. “The status quo is not acceptable. The status quo is death,” Gleason said at the time.  

His words lit a fire in the community, which inspired the formation of the research nonprofit Answer ALS. In the latest push to tackle the neurodegenerative disease, Answer ALS, Microsoft, and people living with ALS have built the world’s largest ALS research hub to fuel discoveries.  

Based in Microsoft Azure, this research ecosystem—called Neuromine—was built in 2020 and doubled its data through the contributions of ALS Therapy Development Institute in 2024. It is now fueling breakthroughs through access to a treasure trove of anonymized patient data, including Gleason's. The hub’s scalable infrastructure offers free access to information and biological samples used in 582 investigations (and counting) around the world, while maintaining the privacy and security essential to maintaining the trust of the ALS community.  

“Co-creation with disability communities is in Microsoft’s DNA. If you're going to build technology for all, you have to include everyone, and that’s what we’ve done with Answer ALS,” says Jenny Lay-Flurrie, Head of Trusted Technology Group and Vice President at Microsoft. “Our technology supporting the everyday needs of the ALS community as well as building first-in-class tools to power ALS research illustrate our enduring commitment to accessibility.”

Neuromine’s ease of use, ability to scale, and world-class security have made it a critical tool in the quest to treat and cure ALS. Used by researchers on a global scale, Azure-based Neuromine is accelerating progress toward the ultimate goal of ending ALS.  

Gleason says, “ALS doesn’t wait. It takes your independence, your voice, your life. So research can’t wait, either.”

Collaborating to create a globally accessible research hub

At its inception, this technology-and-research collaboration came from a shared vision to create an easy-to-use hub for ALS scientists. People living with ALS, legal experts, researchers, and Microsoft technologists came together to map out, then build and refine, this hub. Since then, Neuromine continues to grow as users add structured data from other organizations and study outcomes. It is a living, ever-growing resource to speed the pursuit of new possibilities and pathways.

“Expanding the platform and adding new data to it makes Neuromine relevant to researchers around the world, exponentially increasing its impact,” says Clare Durrett, Managing Director at Answer ALS.  

Verified researchers can access the mountain of data within Neuromine to accelerate their work. “Partnering with Microsoft powers a global reach, sharing data, and ease of use to get to the data, all free for researchers to use,” says Dr. Terri Thompson, Research Program Director at Answer ALS.  

Dr. Julia Kaye is one researcher who is using Neuromine to partner with experts half the globe away. “Because Neuromine is accessible to everyone in the world, it is very easy to collaborate with other researchers around this data,” says the Scientific Program Leader and Research Investigator at Gladstone Institutes. The always-available data facilitates the sharing of ideas across fields and specialties, leading to new avenues of research. 

Accelerating breakthroughs

Within a few weeks of access to Neuromine, researchers can form a hypothesis, tap into and download the relevant data, and receive matching biologic samples, such as blood or cerebral spinal fluid. More than 2,500 people living with ALS have contributed their genetic, molecular, and clinical data to the Answer ALS database. "Neuromine turns individual stories into collective power,” Gleason says. “Open data accelerates everything.”

This access contrasts the former process, which took a year to 18 months to propose an avenue of study, secure grant funding, and recruit a limited number of people to donate samples. “You have to be stubborn in your approach to this disease. The alternative is unacceptable,” says William “Jay” Quinlan, who donated samples to the project and who is now a board member of Answer ALS. When he thinks about the research his data contributed to, he feels a sense of “hope—not necessarily for me, but fighting the disease for everyone.”

In addition, Neuromine includes gene expression data for cell lines, which used to take researchers years to develop independently. “Now with Neuromine, you can access information and clinical data for hundreds of patient lines in a few hours,” Dr. Kaye says. “A single scientist could never generate that amount of data in their lifetime.”  

This rich data enables experts to skip over time-intensive, highly specialized steps and dive into their deeper research questions sooner. Further, funding that would have gone to initial studies can now be put toward projects that validate results and confirm hypotheses. In this way, researchers are leapfrogging early barriers to uncover and confirm new developments.

“There is just a breadth of cell lines, gene expression data, and clinical data available at the snap of a finger on Neuromine because of Answer ALS,” Dr. Kaye says. “It’s a tremendous resource that I am certain is going to change the way we understand, think about, and treat ALS.”

“This breakthrough is dramatically accelerating the pace of ALS research, allowing us to explore possible subtypes of the disease, develop targeted treatments, and move much closer to a cure far faster than ever before,” explains Durrett. “The urgency cannot be overstated. People living with ALS typically have only two to five years. We have no time to waste.” 

Building trust through security and privacy safeguards

Many Neuromine-enabled research projects are on the cusp of verified discoveries. None of this research would be possible without the generosity and dedication of people living with ALS. Everyone involved with Neuromine is staunchly committed to protecting their data and interests, Durrett emphasizes. “We always honor and respect the trust and confidentiality of patients willing to share their data.”  

“Trust goes beyond security and privacy, especially for people with disabilities. Trust also means having technology that just works,” Lay-Flurrie says. Neuromine delivers on both fronts.  

The research hub collects highly personal data, from genomic sequences to biometric data on plasma, cerebral spinal fluid, and cell lines, which can be reproduced in vitro indefinitely. All this information is anonymized so nothing can be linked back to individuals and securely housed in Azure Blob Storage.  

An Azure workspace hosted by the Alzheimer’s Data Disease Initiative provides researchers access to Neuromine’s collective data. Meanwhile, the services that run the portal, plus backup and staging data, are hosted by Answer ALS. So while Microsoft platforms form the backbone of the portal, stakeholders from the ALS and disability communities host the data itself.    

The Neuromine team uses Microsoft Entra ID to manage identities, granting individual researchers access to the platform. It provides secure authentication and streamlined sign in so only approved, verified users access the data. Azure Key Vault encrypts keys and passwords while providing centralized management of secrets and policies.

“The data in Neuromine comes from the world’s leaders in many fields—it's the best of the best data. I have a high degree of confidence in the data being housed there,” Dr. Kaye says.

Trust is foundational to Neuromine’s effectiveness. It is confidence in the security of the hub, as well as belief in how data is being utilized, that leads to the growing scale of data within the research ecosystem. “We have doubled the data assets available to us because this platform is a trusted source—trusted by us, researchers, and individuals who contribute their data,” Durrett says.

Searching for a cure via scalable architecture

Neuromine was designed and developed for big things from the beginning. “We’re building for long-term scale because this is built to reach a huge goal: to find treatments and a cure for ALS,” Lay-Flurrie says.  

A recent AI-powered study run by Microsoft experts projected Neuromine’s benefit to ALS research. The study estimates that the data hub and tools are accelerating research progress by as much as 65% over the next few years. “That’s huge. We’re seeing ALS research advance at a pace we haven’t seen before," Durrett says. “That progress is growing exponentially as we add data and as technologies advance.”  

The user-friendly design of Neuromine helps approved researchers—even high schoolers—access the data in moments. The platform uses Azure Front Door on the front end, which provides content reliably and quickly.  

Azure AI Search powers Neuromine’s query function so researchers can quickly learn details about an individual’s disease trajectory or even their DNA, which helps pinpoint cell lines to further study. Additionally, Answer ALS is developing a chatbot in Microsoft Foundry to use generative AI to answer user questions and direct researchers to relevant data.  

Currently, 582 research projects are using Neuromine. Researchers from universities, pharmaceutical companies, nonprofit organizations, and more are exploring diverse pathways to identify ALS subtypes and treatments. While researchers have not yet identified subtypes of ALS, “we’re getting closer and closer,” Thompson says. “They’re getting to the point of validating early indicators way faster than ever before.”

These gains are in part due to the quality and breadth of the data made available by Neuromine and the thousands of people who contributed their data. “Before Neuromine, the number of cell lines available were extremely limited, and there were often problems or abnormalities with them. In addition, the data that accompanied those cell lines was limited,” Kaye says. “Now I can go to this database and access hundreds and hundreds of patient lines with accompanying clinical and gene expression data that I was not able to do before.”  

Neuromine’s scaled architecture ingests, processes, and serves trillions of data points without compromising performance, and it has capacity to absorb new data. As researchers execute studies and discover new avenues of inquiry, they add that information back into Neuromine. As a result, it continually grows to reflect advancements and propel research forward, faster. “Researchers trust us to hold their additional data because we’re a reliable platform,” Thompson says.

Innovating to save lives

“Trust opens the door to innovation,” Lay-Flurrie says. “Safety, privacy, security, and accessibility together lead to breakthroughs that will improve and even save the lives of countless people.”

Neuromine is enabling these breakthroughs even beyond ALS. By partnering with the Alzheimer’s Data Disease Initiative, Answer ALS is providing novel data to dementia-related researchers while offering ALS researchers access to data on other neurodegenerative diseases, including Alzheimer’s and Parkinson’s. “Since this data is on the same platform, researchers can do comparative studies and cross-pollinate ideas,” Thompson says. “They may find similar pathways among diseases, learn from a whole other group of research, and bring it all together to help solve not one but maybe multiple challenges.”  

Others are replicating the infrastructure of Neuromine to duplicate Azure cloud environments to house similar databases for different conditions. “Curing ALS is a unique problem. The architecture organizations need to find that cure, however, is not,” Lay-Flurrie says. “That’s why we built this specific architecture to not only scale for ALS research but also export it to hopefully help tackle other conditions.”  

The potential of breakthroughs grows with every researcher and study that leverage Neuromine. “All the data available through Neuromine will change ALS as we know it,” Dr. Kaye says. “Researchers can access this treasure trove of data that does not exist anywhere else in the world. I’m certain it’s going to change the therapeutic landscape of ALS.”

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