Read the announcement on targetals.org

Comprehensive datasets from the Target ALS Natural History Study are now available for global scientists to drive biomarker and therapeutic discovery for ALS.

Toronto, ON – May 14, 2024 – Target ALS, a nonprofit organization that breaks down barriers to accelerate research for Amyotrophic Lateral Sclerosis (ALS), has added a Natural History Study Collection to their recently launched data platform powered by Omics AI. The platform provides no-strings-attached access to comprehensive datasets and analysis tools to fuel discovery of treatments and biomarkers for ALS.

Since the launch of the platform in March 2024, 95 users from academia and industry have already requested access to the data, underscoring both the need and enthusiasm within the scientific community for large, comprehensive datasets to drive progress in ALS research.

The Natural History Study Collection contains data from Target ALS’ Natural History Study, which aims to enroll 800 ALS patients and 200 healthy controls to create the most comprehensive biosample and dataset collection for ALS biomarker discovery and research efforts. This collaborative, international, multi-site study has recently expanded from 6 to 12 sites across the USA, South America, and Israel and aims to address the gaps in data from genetically and ethnically diverse populations across the globe. The study has enrolled more than 100 participants to date.

Clinical data is generated by neurologists from the foremost ALS clinics involved in the study, and genomic data is generated at the New York Genome Center. This collection includes de-identified clinical and demographic information, speech data, respiratory function, and whole genome sequencing datasets. Data can be viewed, sorted, and mined through the portal, which is actively updated with new data from additional participants in the ongoing study. Biofluids, including blood, urine, and cerebrospinal fluid are also available for request through Target ALS. “The data platform is a tremendous tool that amplifies data sharing and accelerates data analysis from our ongoing Natural History Study in realtime to researchers worldwide,” says Amy Easton, Ph.D., Senior Director of Scientific Programs at Target ALS.

New data will be uploaded to the platform every 4-6 months. This collection joins the inaugural Postmortem Tissue Collection, which contains whole genome sequencing, spatial and bulk transcriptomics, semi-quantitative histopathology, digitized images of pTDP43 staining, and clinical and demographic data from 260 ALS cases, Frontotemporal Dementia (FTD) cases, and non-neurological controls.

The Target ALS Data Platform was created in partnership with DNAstack and Verily. The platform is powered by DNAstack’s Omics AI software suite, which provides researchers a new way of unveiling discoveries while simultaneously making it easier for data stewards to improve the accessibility of their datasets. The platform uses Verily Workbench, a collaborative research environment for governing and analyzing  global multimodal data. Researchers can select relevant data in Omics AI  and then pass it to an analytical workspace in Verily  Workbench, where they can use tools of their choice to synthesize the data and invite collaborators to share insights. The expertise of these two companies ensures the Target ALS Data Platform adheres to data compliance and security measures while keeping collaboration paramount to advance understanding of ALS and accelerate biomarker and treatment discovery.

Read more about how Omics AI is powering breakthrough discoveries at Target ALS.

Read more about the Target ALS Data Platform at https://bit.ly/4cBuO3B.

Access the Target ALS Data Platform at dataportal.targetals.org.

About DNAstack

DNAstack is a Canadian company whose mission is to save and improve lives by unlocking the collective power of the world’s genomics and health data. Omics AI is a software suite by DNAstack that enables privacy-preserving federated insights across distributed data. DNAstack is a global leader in the development of open, interoperable standards as part of the Global Alliance for Genomics & Health (GA4GH).

About Target ALS

Target ALS is a 501(c)(3) medical research foundation breaking down barriers to accelerate research for Amyotrophic Lateral Sclerosis (ALS) and realize a world where everyone with ALS lives. Founded in 2013 by former New York City deputy mayor Dan Doctoroff — who lost both his father and uncle to ALS and was himself diagnosed in 2021 – Target ALS has transformed ALS research through their landmark Innovation Ecosystem model. The organization has fostered unprecedented collaborations between academia and the pharma and biotech industry, lowered barriers to access for critical research tools, and become a hub of communication and networking for the worldwide scientific community, resulting in the launch of 7 clinical trials and dozens of drug discovery programs over the last decade. For more information and to get involved, visit www.targetals.org.