Working Group 4
Creation of a data collection and sharing policy/platform
Led by Sergi Bermúdez i Badia from NeuroRehabLab | Universidade da Madeira
Aims
Working Group 4 (WG4) is organised around three core areas defined in the Action, which together contribute to its main deliverable: a standardized framework and platform for data collection and sharing in XR neurorehabilitation of spatial neglect (SN). Building on the outputs of WG2 and WG3, WG4 aims to define interoperable data policies, establish common data elements, and implement a technical infrastructure to support multicentre research. The group promotes FAIR (Findable, Accessible, Interoperable, Reusable) data principles to enable scalable and high-quality evidence generation across institutions and countries.
Plan
WG4 works across three key areas defined in the Action, each contributing to the development of the data policy and platform:
- Data Infrastructure and Platform Implementation
Develops and implements the data storage and sharing infrastructure, building on existing European and international ecosystems (e.g., Zenodo, EUDAT, EOSC, EHDS). This includes integrating the data elements defined in WG2 and WG3 to enable multicentre collaboration, interoperability, and data reuse. - Data Standards and Ontologies
Identifies and evaluates existing standards (e.g., FHIR, LOINC, SNOMED CT, OMOP CDM, CDISC) and defines common data elements for XR-based assessment and treatment of SN. This includes establishing interoperable data structures and best practices for organising and annotating data. - Ethical, Legal, and Governance Frameworks
Addresses regulatory and ethical requirements for cross-country data collection and sharing, including compliance with GDPR and relevant European guidelines. This area focuses on defining data governance policies, access procedures, and frameworks for responsible and secure data use.
Get Involved
Working Group 4 welcomes members with expertise in data science, biomedical and health informatics, XR development, clinical research, data governance, legal and ethical frameworks, and software engineering. Researchers, clinicians, developers, and policy experts are all encouraged to contribute. If you are interested in enabling data-driven XR neurorehabilitation and supporting large-scale collaborative research, we would be delighted to hear from you.