Scientific report 2023 of the Haemoglobinopathies Working Party (HWP)

The elections for the HWP took place in April 2023 and the election of the Chair was announced during the General Assembly at the 49th Annual Meeting of the EBMT on 25 April.

During the rest of the year to set up the WP and start activities the following actions were carried out:

1. Josu de la Fuente was chosen as the WP Secretary
2. Constitution of the Scientific Board
3. Migration of the six studies already approved by the Paediatric WP. It should be noted that these studies were not discussed by this working group. One of these studies is very difficult to be completed because of the complexity of the questions (see below). Migration issues have been agreed with the PWP chair.
4. On-site meeting with the statistics office in Paris. During this meeting it was noted that the compilation of the questionnaire was very limited due to the complexity and number of questions. A new shortened questionnaire was developed and discussed with the PI. A seventh study has been proposed and will be discussed at the next HWP Meeting.
5. Agreement with EHA for development of EHA/EBMT guidelines for gene therapy in Sickle cell disease
6. The first HWP Meeting took place in Jan 2024.