Huremagic Benjamin, Sattanathan Nishkala, Geysens Mathilde, Harwood Janet, Verbesselt Jente, Meynants Senne, Swillen Ann, Van Den Bogaert Kris, Drakulic Danijela, Cuturilo Goran, van Amelsvoort Thérèse, Linden David, Oliva-Teles Natália, Jorge Paula, van den Bree Marianne B M, Hall Jessica H, Chizari Haleh, Ardeshirdavani Amin, Harwood Adrian J, Vandeweyer Geert, Moreau Yves, Vermeesch Joris Robert
Laboratory of Cytogenetics and Genome Research, Centre for Human Genetics, KU Leuven, Leuven, Belgium.
Department of Medical Genetics, University of Antwerp, Antwerp, Belgium.
Eur J Hum Genet. 2025 Aug 20. doi: 10.1038/s41431-025-01927-5.
Access to large patient cohort data and biobanked resources is a catalyst for progress in genomics and biomedical research, increasing statistical power, and unlocking deeper insights-especially in areas like rare diseases and mental health. Responsible research necessitates maintenance of data privacy, regulatory compliance, and research standardization. It can appear that these guiding principles oppose each other and present barriers to responsible Open science. To address these critical challenges, we developed MINDDS-Connect, a federated data collaboration platform that integrates a web-based interface with decentralized Docker instances via a REST API. This architecture allows registered users to securely query samples across the platform's network, and offers a tool to facilitate the formation of virtual multi-centric meta-cohorts and research collaboration. MINDDS-Connect allows institutions to retain data control while enabling collaborative research and meta-cohort analysis through standardized metadata fields. Its implementation across five European centers enhanced the accessibility of 900 samples, demonstrating its effectiveness in enabling cohort construction and promoting collaborative research. The platform provides a secure, open-source solution consistent with EU Open Science policies, advancing large-scale mental health research.
获取大型患者队列数据和生物样本库资源是基因组学和生物医学研究取得进展的催化剂，可增强统计能力并带来更深入的见解，尤其是在罕见病和心理健康等领域。负责任的研究需要维护数据隐私、遵守法规并实现研究标准化。这些指导原则似乎相互对立，给负责任的开放科学带来了障碍。为应对这些关键挑战，我们开发了MINDDS-Connect，这是一个联邦数据协作平台，通过REST API将基于网络的界面与去中心化的Docker实例集成在一起。这种架构允许注册用户在平台网络上安全地查询样本，并提供一种工具来促进虚拟多中心元队列的形成和研究合作。MINDDS-Connect允许机构在保留数据控制权的同时，通过标准化元数据字段实现协作研究和元队列分析。该平台在五个欧洲中心的实施提高了900个样本的可及性，证明了其在实现队列构建和促进协作研究方面的有效性。该平台提供了一个符合欧盟开放科学政策的安全、开源解决方案，推动了大规模心理健康研究。
