Key points
Survey maps expertise and training gaps in hemoglobinopathy care, highlighting needs in ethics, AI and implementation research
Strong interest in AI, data analysis, and collaboration shows shift toward shared learning and innovation in hemoglobinopathy care
Abstract
Effective hemoglobinopathy management requires specialized, multidisciplinary knowledge. As the hemoglobinopathy prevalence rises worldwide, there is an urgent need to train the next generation of healthcare professionals (HCPs) to improve patient outcomes. This study aimed to map expertise and educational priorities of trainees and mentors involved in hemoglobinopathy care and research within the European COST Action HELIOS, a global network of over 220 individuals from 33 countries, endorsed by ERN-EuroBloodNet. A cross-sectional survey was conducted among HELIOS participants (September 2024–January 2025), covering diagnosis, management, and treatment. Key topics were identified through a literature review and expert consensus.The survey assessed mentors’ expertise and willingness to teach, as well as trainees' educational priorities. Data were analyzed using descriptive and comparative methods. A total of 76 HELIOS participants from 27 countries responded in the initial release. Most respondents' age was 30–49 (78%), held PhDs (78.3%), primarily working in teaching hospitals (52%) or research institutes (30.7%). Physicians were the largest group (39.5%), with 13 other professional roles represented. 66% sought training, including 18 mentors. Mentor expertise focused on molecular pathophysiology (50%) and diagnosis (43.3%), with gaps in implementation science, ethics, pain management, and patient monitoring (all ∼20%). Underrepresented areas included Hematopoietic Cell Transplantation, palliative care, and interprofessional models (all ≤14%). Trainees prioritized topics on diagnosis (86%), research (84%), ethics (80%), and emerging areas such as AI (91%). No significant regional/age differences were observed. Gaps in comprehensive, patient-centered care persist. Findings support the development of multidisciplinary educational frameworks aligned with evolving needs.
Author notes
Data Sharing: The data that support the findings of this study are available from the corresponding author upon reasonable request.
Acknowledgements: This project is based upon work from COST Action Hemoglobinopathies in European Liaison of Medicine and Science HELIOS CA22119, supported by COST (European Cooperation in Science and Technology)." HELIOS is endorsed by the European Reference Network on Rare Haematological Diseases (ERN-EuroBloodNet)-Project ID No 101157011. ERN-EuroBloodNet is funded by the European Union within the framework of the Fourth EU Health Programme.
