Survey on Data Management Practices in Hemoglobinopathies within HELIOS Working Group 3 (WG3)

This dataset contains anonymised responses from a survey conducted within HELIOS Working Group 3 (WG3) to assess data management practices in the field of hemoglobinopathies. The survey focused on how data related to hemoglobinopathy care and research are collected, stored, standardised, governed, and shared across participating institutions. Key topics covered include data collection workflows, use of digital systems, data standards and interoperability, data quality, governance frameworks, ethical and legal considerations, and barriers and needs related to data sharing and reuse. The survey targeted healthcare professionals, researchers, and data managers involved in hemoglobinopathy-related activities within the HELIOS network. All responses were fully anonymised prior to deposition. The dataset does not contain any directly or indirectly identifiable personal data. This dataset supports ongoing efforts within HELIOS WG3 to improve data harmonisation and data infrastructure for hemoglobinopathies and may be reused for methodological, comparative, or policy-oriented research. This record is part of the HELIOS COST Action CA22119 Zenodo Community