Scientific report 2024 of the Haemoglobinopathies Working Party (HWP)

The Haemoglobinopathies Working Party (first 18 months of life) held several meetings during this period: two in person and eight remotely.

The main focus has been on improving the quality of the registry data. It was recognised early on that data quality needed significant improvement to produce high-quality research papers. Several attempts have been made to encourage centers to complete data registration. After multiple meetings with different EBMT offices, and with essential support from the Paris office, a new strategy has been developed and will be implemented in the coming months.

We are confident that by the end of the year, data quality will have improved significantly, allowing us to complete the proposed studies soon. However, even at this stage, there was sufficient data for a highly successful ASH presentation on the overall clinical outcomes of sickle cell disease by Josu de la Fuente (see abstract here), who is currently editing the related article. Additionally, two abstracts—one on thalassemia (see abstract here) and one covering both diseases (see abstract here)—have been accepted as posters at ASH 2024.

An important achievement of the group is the establishment of a subcommittee on HCT in low-income countries. This subgroup is particularly significant, as most patients today live in these regions. Coordinated by Miguel Abboud from Beirut, the subcommittee has already held two meetings, with more planned. Furthermore, three harmonisation projects have recently been finalised and are expected to be completed within the next two years.

Finally, on a lighter note: we participated, together with Antonio Risitano - SAAWP Chair - in the ASH 2024 race. It was a beautiful early morning in sunny San Diego.