HELIOS COST ACTION CA22119
Published October 8, 2025 | Version 1
Other Open

HELIOS Working Group 3 (Data Management, Sharing, and Analysis) Survey

Authors/Creators

  • 1. ROR icon Centre Inria d'Université Côte d'Azur

Contributors

Data collector:

Project leader:

  • 1. The Cyprus Institute of Neurology and Genetics
  • 2. The Cyprus Insititute of Neurology and Genetics
  • 3. University of Nicosia

Description

This record contains the HELIOS Working Group 3 (Data Management, Sharing, and Analysis) Survey.

The survey was developed to gather information on current practices, policies, and infrastructures related to data management in the field of hemoglobinopathies. It explores how clinical and research data are collected, stored, shared, and analysed across institutions and regions.

By providing a standardised tool, the survey supports the mapping of existing practices, highlights barriers and opportunities for improvement, and fosters international collaboration on data governance and interoperability. This work contributes to the overall HELIOS initiative to strengthen research, harmonisation, and knowledge sharing in hemoglobinopathies.

 

This record is part of the HELIOS COST Action CA22119 Zenodo Community

Files

HELIOS - WG3 - Data Management Sharing Analysis - Survey.pdf

Files (45.8 kB)

Additional details

Funding

European Cooperation in Science and Technology
HELIOS CA22119