Australian Stem Cell Registry (ASCR): Enabling Discovery, Provenance, and Dynamic Consent for Stem Cell Research

Faux N1, Butcher S1, Miranda, S4, Lee S2, McIvor A1, Hebrard M3, Wells C1

1The University Of Melbourne, Parkville, Australia, 2WEHI, Parkville, Australia, 3Garvan Institute of Medical Research, Darlinghurst, Australia, 4Amazon Web Services, Melbourne, Australia

Biography:

Dr Noel Faux is a Senior Research Data Specialist at the Melbourne Data Analytics Platform (MDAP), University of Melbourne. He holds a PhD in bioinformatics, Grad Dip in Computer Science (Monash University), and a BSc (Hons, Genetics) from La Trobe University. Dr Faux then did his post-doctoral research at the Florey Institute of Neuroscience and Mental Health. During his time there, he applied statistical and machine learning techniques to identify biomarkers for the early detection of Alzheimer's disease and cognitive decline. During this time, he also worked for the CRC for Mental Health where he developed its data management plan across the different research streams. He modernised the Victorian Parkinson’s Disease Registry’s database system. Dr Faux then worked for 4.5 years at IBM Research, applying machine learning to several medical domains. Currently, Dr Faux supports a wide range of academic researchers with their data-intensive research projects. In these collaborations, he is applying statistical and machine learning techniques to achieve research automation or insight discovery and assisting in improving data management and research workflows. Over his research career he has published 44 peer reviewed articles and two book chapters, which have been cited 4,854 time and holds a H-index of 30 (google scholar) and holds 7 patents.

Abstract:

Stem cell research holds enormous potential for healthcare and saving lives. Within Australia, hundreds of Stem Cell Lines (SCLs) are generated annually, yet no central resource exists to support their discovery or document their provenance. Critically, understanding the consent attached to each SCL, and its permitted uses remains opaque and inconsistent.

To address these gaps, we have developed the Australian Stem Cell Registry (ASCR). The registry captures rich metadata describing the protocols used to generate and characterise each cell line, along with its provenance and research outputs. A user-friendly curation tool which integrates targeted large language model (LLM) prompts to support automated information extraction from published articles, enabling retrospective population of historical SCLs with rigorous curation. We are also partnering with the international Human Stem Cell Initiative Registry (hPSCreg) to synchronise Australian SCLs with the global registry.

Consent management presents a distinct challenge in the stem cell community. SCLs may persist for decades beyond a donor's death, yet consent frameworks are often anchored to technologies available at the time of donation. As transformative technologies emerge, mechanisms for reconsent or consent adjustment become essential, enabling new uses of cell lines beyond the original consent framework. To address this, we are integrating the dynamic consent platform CTRL into the ASCR, enabling enhanced search over live consent information and supporting responsive, donor-aligned governance.

This presentation will describe the ASCR technology stack, the curation platform, LLM-assisted information retrieval, and the anticipated integration with the CTRL platform.

 

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