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Emory pioneers ALS genetic data repository with NIH and UMass Chan Medical School
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Emory pioneers ALS genetic data repository with NIH and UMass Chan Medical School

— Getty Images/Sean Anthony Eddy

In a notable advancement in the battle against amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD), Emory University, in collaboration with UMass Chan Medical School and the National Institutes of Health (NIH), has secured more than $3 million in support from The ALS Association to establish a pioneering cloud-based central repository of genetic data, named ALS Compute. This innovative initiative consolidates data from multiple large-scale projects into a single, easily accessible dataset, unlocking the full potential of ALS and FTD research. 

“ALS Compute marks a turning point in our understanding of these devastating diseases,” says Jonathan Glass, MD, professor of neurology and pathology with Emory University School of Medicine and founding director of the Emory ALS Center. “Our collaborative approach with UMass Chan Medical School and the NIH has allowed us to create a resource with potential to revolutionize the field of ALS genetics.”

Until now, ALS genetic data in the United States had been fragmented across six separate whole-genome sequencing (WGS) projects, including Answer ALS, CReATe Consortium, Genomic Translation for ALS Care, New York Genome Center ALS Consortium, NIH and Project Mine USA. Although these ventures have identified more than 40 genes linked to ALS, access to this data has been hindered by the need for high-performance computing infrastructure, extensive data storage and substantial financial resources.

“The discovery of genes linked to ALS has transformed our understanding of the disease. However, we know there is still a lot to learn,” says Paul Larkin, PhD, Director of Research at The ALS Association. “Large-scale data consolidation and harmonization efforts like ALS Compute can help make the abundance of genetic information that has already been collected accessible to more researchers around the world so it can be leveraged to its full potential.”

ALS Compute was co-founded by Glass, John Landers, UMass Chan Medical School, and Bryan Traynor from NIH’s National Institute on Aging. 

To date, ALS Compute has brought together over 7,400 WGS samples, with more expected to be added, including approximately 35,000 control samples. The initial dataset and analytical tools are accessible via the Terra platform hosted by the National Human Genome Research Institute's Genomic Data Science Analysis, Visualization and Informatics Lab-Space (AnVIL).

“Our overall goal for ALS Compute is to increase access to ALS genetic data, especially for researchers in countries or at institutions that do not have the infrastructure to handle such large datasets,” Landers says. “By utilizing the AnVIL platform, we have been able to make both the data and analysis tools cloud based. So not only have we made the process as simple as possible to access the data, but also eliminated the need for local computing resources to do the analysis. Our hope is that by expanding the number of individuals who work on ALS genetics, more novel discoveries will be made.”

In recognition of the initiative's significance, the researchers have secured additional funding exceeding $1.6 million from the NIH. In the next phase, they plan to extend the cohort beyond the United States, encompassing Canada and other countries, while augmenting annotations and analysis of the identified genetic variants. Concurrently, they will enhance cloud-based analysis tools for researchers. Access to this invaluable data can be requested through DbGaP by interested researchers. 

About the Emory ALS Center

The Emory ALS Center is part of the Emory Brain Health Center. Founded and directed by Jonathan Glass, MD, it is one of the largest clinical centers for ALS in the United States. It is recognized nationally as a Treatment Center of Excellence by the ALS Association and is designated a Certified ALS Center by the Muscular Dystrophy Association. The Center’s approach to ALS care and research bridges numerous disciplines and departments and is comprised of a multi-disciplinary team of physicians, nurses, therapists, social workers, basic and clinical research scientists, students, fellows and volunteers.

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