The JARDIN Hackathon to Seek Solutions to Overcome Technical Barriers in Health Data Exchange: From the Point of Care to European Registry Networks

This research paper, published in the Data Science Journal, explores the outcome of a hackathon organised within the JARDIN Joint Action.

Effective exchange of health data between healthcare providers, national registries and ERNs is vital for the advancement of rare disease research and clinical care, yet technical barriers still remain. JARDIN finds existing solutions to these barriers, for example, by identifying at the technical level existing infrastructure and software ready to be adapted and reused.

This paper describes the methodologies and outcomes of the hackathon, conducted as a software-oriented workshop to collaboratively identify and implement solutions to technical barriers identified as relevant to rare diseases.

Key insights from the study include:

– The challenges addressed by the experts who attended the hackathon, including data harmonisation and secure data access.

– The solutions that were found, including the use of semantic models for rare disease data harmonisation across organisations.

– The output this event had on influencing further real-world evaluation and pilot testing to improve data exchange.

Download the research paper here: https://jardin-ern.eu/wp-content/uploads/2026/09/JARDIN-Hackathon-research-paper.pdf