CCI4EU (Comprehensive Cancer Infrastructures for the European Union) is a European project aiming to help Member States and Associated Countries improve or develop their existing or future Comprehensive Cancer Infrastructures (CCIs), by helping develop their research & innovation-related capacities.
This course is the sixth of 10 online training courses organised within the project to help countries develop an effective comprehensive infrastructure and widen the reach of this grant. The topic of this online course is: Data Sharing and Data Exchange
The aim is to understand the rationale, regulatory aspects and possible solutions for data sharing/exchange for research.
Target audience
Directors, managers and coordinators at hospitals/clinics/CCIs, clinicians, researchers, patients advocates.
Course delivery
This online course was held live on 15 April 2025 via this webpage. The entire course was recorded and is now available as on-demand material.
To access the on-demand materials (after the live streaming), participants must register to the course, login to the e-ESO platform and click on the play buttons inside the course programme.
Official language
The course was held in English. Translations are not provided, but English subtitles can be activated and transcriptions can be automatically translated using free online tools.
Registration
Registration to the course is free but mandatory. Registration will be confirmed by e-mail.
Certificate of attendance
Participants will be issued a certificate of attendance once they have completed a minimum attendance of 75% of the entire course. An online evaluation questionnaire must be completed in order to receive the certificate that will be issued by email. The evaluation questionnaire will appear in the right-hand column of the course page when participants have completed 75% of the course.
Data Sharing and Exchange - Rationale and Background
15/04/2025
FAIR healthcare and research data
Expert:
Petro Kalendralis, NL
Q&A
Data quality and standards
Expert:
Andrea Splendiani, CH
Q&A
ELSI (Ethical, Legal, Societal) Implications
Expert:
Barbara Bressolles, ES
Q&A
Break
15/04/2025
Data Sharing & Exchange - Examples
15/04/2025
Data Sharing – Experiences from Population-Based Cancer Registries
Expert:
Gijs Geleijnse, NL
Q&A
Federated data sharing
Chair:
André Dekker, NL
Q&A
Closing Remarks and Key Takeaways
15/04/2025
Chairs:
André Dekker, NL - Xosé M Fernández, UK
Barbara Bressolles
Senior Global Privacy Director & EU Data Protection Officer,
IQVIA,
Madrid,
Spain
André Dekker
Medical Physicist; Professor of Clinical Data Science,
Maastricht Comprehensive Cancer Center,
Maastricht,
The Netherlands
Xosé M Fernández
Head of DigiONE,
IQVIA,
Cambridge,
United Kingdom
Gijs Geleijnse
Head of Innovation and International Partnerships,
IKNL Netherlands Comprehensive Cancer Organisation,
Utrecht,
The Netherlands
Petro Kalendralis
Postdoctoral researcher,
Department of Radiation Oncology (Maastro); GROW Research Institute for Oncology and Reproduction, Maastricht University Medical Centre+,
Maastricht,
The Netherlands
Andrea Splendiani
Principal, Head of Center for Health Data Semantics,
IQVIA,
Basel,
Switzerland
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