It Takes A Village: Gratitude for Our DataCite Journey

This presentation shares the journey of the ALS Therapy Development Institute (ALS TDI) in adopting and integrating DataCite services to support its mission of accelerating the discovery of treatments for Amyotrophic Lateral Sclerosis (ALS). It outlines why ALS TDI joined DataCite, how persistent identifiers enhance their research infrastructure, and the challenges DataCite helps address in managing, sharing, and contextualizing complex real-world data. The presentation provides an overview of the ALS Research Collaborative (ARC), a comprehensive program that collects longitudinal self-reported data, digital measurements, biological samples, whole-genome sequencing, and integrated electronic health records from people living with ALS. It highlights how DataCite DOIs and metadata improve data discoverability, support global data sharing through the ARC Data Commons, and foster collaboration across the research community. Through this case study, the presentation illustrates how persistent identifiers play a critical role in building trustworthy, interoperable, and impactful research ecosystems. A recording of the presentation is available on the DataCite YouTube channel: https://www.youtube.com/watch?v=aUKrGLiDyqA&t=1300s