A roadmap for navigating child health research data sharing across Canada and beyond – building on UCAN CAN-DU
Authors' conclusion
We have shared how UCAN CAN-DU navigated barriers to data sharing, providing an example of data sharing for researchers in pediatric rheumatology.
Study context
- Population
- Leaders in child health, genomics, rheumatology, bioethics, privacy and records, bioinformatics, and legal counsel; UCAN CAN-DU collaboration across centers in Canada and the Netherlands
- Outcome
- Barriers and enablers for sharing of health data in pediatric rheumatology
Methodological detailsexpert consultation and case example, practical case example
- Expert consultation and case example
- Practical case example
Main finding
As reported in the abstract
- Barriers: lack of standardized consent, ethics review for multi-site projects, data governance frameworks aligned with institutional and regulatory requirements, differing data standards and lack of interoperability, managing data access
- Enablers (UCAN CAN-DU): standardized consent forms, centralized ethics review and reciprocity agreements; network supporting data interoperability and harmonized procedures; documentation incl. legal agreements, secure healthcare data storage compute facility, data access advisory committee with clear policies for secondary data use
Original publication
A roadmap for navigating child health research data sharing across Canada and beyond – building on UCAN CAN-DU. Pediatr Rheumatol Online J. Published 2 September 2025. doi:10.
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