Descriptive retrospective study evaluates data usability in a global stem cell registry, highlighting key challenges.
Background and Objectives This descriptive retrospective study evaluated the content, completeness and usability of information available in the Human Pluripotent Stem Cell Registry (hPSCreg®), including registered cell lines, research projects, clinical studies, donor characteristics and regulatory information. Materials and Methods We analysed data registered in hPSCreg® from January 2008 to December 2021. We analysed the data regarding cell lines, research projects, clinical studies, diseases, countries and legal issues. Results There were 7538 total cell lines registered in the hPSCreg®. The most common derivation and generation countries were the United Kingdom, the United States, Germany and China. There were 3139 (46.5%) cell lines labelled as readily obtainable for a third party; few (7.2%) were labelled as available for commercial use. The most common diseases of the donor were Parkinson's disease, Alzheimer's disease and diabetes mellitus. Complete characterization data were available for the minority of the cell lines. The most common sponsor of research projects registered in the hPSCreg® was the European Union's Seventh Framework Programme (FP7). There were 97 registered clinical trials in the hPSCreg®. Challenges identified were incomplete user‐entered information, entry of non‐standardized information about diseases and continuing verification of the evolving legal status of embryonic stem cell (ESC) research per country. Conclusion The hPSCreg® represents an important international resource for stem cell research; however, this evaluation identified substantial variation in data completeness and standardization across registry fields. Future development should focus on improving the completeness of key metadata, standardization of terminology and systematic monitoring of registry data quality.
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Puljak et al. (2026) studied this question.
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