The ALS Therapy Development Institute (ALS TDI) is pleased to announce its acceptance as a member of DataCite, a leading global organization dedicated to ensuring research is openly available and accessible across scientific disciplines. This partnership will significantly enhance the discoverability, accessibility, and citability of the ALS Research Collaborative (ARC) dataset, a vital resource in the global search for effective ALS treatments.
Matthew Buys, Executive Director of DataCite, welcomed ALS TDI to the community, emphasizing the two organizations’ shared commitment to advancing open research.
"We are pleased to welcome ALS Therapy Development Institute to the DataCite community. DataCite is committed to supporting organizations around the world in driving the discovery and reuse of research through open and connected infrastructure, and we look forward to collaborating with the ALS Therapy Development Institute as they advance their important efforts to end ALS."
Empowering ALS Research Through Enhanced Data Accessibility
The ARC dataset encompasses over a decade of real-world data contributed by individuals living with ALS through the ARC Study. These comprehensive data provide invaluable insights into ALS disease progression and can help identify potential therapeutic targets. In 2023, ALS TDI launched the ARC Data Commons, a cloud-based platform, making this deidentified ARC dataset accessible to researchers worldwide. This platform enables scientists to analyze ALS data, define patient subsets, and identify promising drug targets.
By joining DataCite, ALS TDI will assign Digital Object Identifiers (DOIs) to ARC datasets, ensuring they are permanently accessible, findable, and citable in scientific literature. This enhancement will significantly improve discoverability, especially for researchers unfamiliar with the ARC Data Commons, facilitating broader utilization of this invaluable resource.
“Our goal is to maximize the impact of our research on ALS,” said Danielle Boyce, MPH, DPA, Principal Investigator, Real World Evidence at ALS TDI. “By making the ARC dataset more accessible and indexable in global databases, we are opening new doors for collaboration and enabling more scientists to leverage these data in their work to find treatments for ALS.”
Strengthening Global Data Governance and Collaboration
DataCite membership not only enables ALS TDI to assign DOIs to its datasets but also provides opportunities to contribute to global data governance and research collaboration. This move aligns ALS TDI with leading research institutions and data-sharing initiatives, amplifying its impact within the scientific community. It is also consistent with FAIR data principles ("Findable, Accessible, Interoperable, and Reusable,”) which are international best practices in managing research data.
“Contributing to global data governance means ensuring that research data are managed and shared in a way that is consistent, reliable, and beneficial to the entire scientific community,” Boyce explained. “For example, by participating in DataCite working groups, we can help shape standards for data citation and metadata, ensuring that researchers everywhere can easily find and understand the data they need. This collaboration enhances the reproducibility and transparency of ALS research, accelerating progress towards effective treatments.”
Beyond the ARC dataset, ALS TDI will explore applying DataCite DOIs to other scientific resources, including publications, presentations, and supplementary research materials, further solidifying its role in the digital research ecosystem.
This milestone represents a significant advancement for ALS research, underscoring ALS TDI’s commitment to open science, collaboration, and accelerating the development of effective ALS therapies.
For more information about ALS TDI and the ALS Research Collaborative, visit www.als.net/arc-data-commons.
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