SIOPE statement on EHDS

A Harmonised Data Sharing Framework is Vital for Life-Saving Research.

SIOPE Statement on EHDS: A Harmonised Data Sharing Framework is Vital for Life-Saving Research

A robust EU framework on health data sharing is vital to:

  • facilitate cross-border scientific collaboration,
  • improve standards of care,
  • drive overall progress in childhood cancer.

Due to the rarity of childhood cancers, cross-border collaboration and data-sharing are crucial to overcome challenges in conducting research and exchange specialist expertise in care delivery.
The European Society for Paediatric Oncology (SIOPE) welcome the progress made in the path to adopting the Regulation for the European Health Data Space (EHDS), aimed at providing a harmonised health specific ecosystem to unlock the full potential of health data.

The topic of secondary use of health data – which includes sharing of electronic health data for the purposes of academic and clinical research – is of particular importance to our community.

To understand our recommendations on consent for secondary use of data, please consult our statement

In addition, please refer to our Comment in The Lancet Oncology on “The impact of the EU General Data Protection Regulation (GDPR) on childhood cancer research in Europe”. Here you can find a set of recommendations from the paediatric haemato-oncology professional community to enhance the data-sharing environment in the EU.