Limited access to transcranial doppler screening and stroke prevention for children with sickle cell disease in Europe: Results of a multinational ERN-EuroBloodNet mapping

Speakers: Raffaella Colombatti

DESCRIPTION

Children with Sickle cell disease (SCD) are at increased risk of cerebrovascular events such as stroke, silent infarcts and neurocognitive impairment. The role of transcranial doppler ultrasound scanning (TCD) to identify sickle cell anemia children at high risk of stroke is well established. For effective prevention of stroke risk, annual TCD according to a defined protocol is recommended for patients aged 2-16 years, with red blood cell transfusion therapy for those at risk. However, there is no information regarding screening for stroke risk and stroke prevention programs in Europe.

Accordingly, ERN-EuroBloodNet conducted a European mapping exercise on for the identification of TCD availability for SCD pediatric patients aiming to:

• Assess the state of the art of TCD screening and stroke prevention programs in European Expert Centers
• Identify issues related to the lack of access, lack of training for staff, lack of adequate protocols for implementation of TCD and treatment afterwards, which could be addressed through dedicated actions in the network.

Results show that less than 30% of children with SCD followed in European Centers receive annual TCD according to recognized guidelines. This first multinational European survey allowed the identification of issues related to the lack of access to TCD, lack of trained staff, lack of adequate protocols for implementation of TCD and treatment afterwards, which will need to be addressed through dedicated actions.

In order to address the gaps identified, an International Neurovascular Training Course on Sickle Cell Disease was held in March 2023 in Padova.

The dissemination webinar will show the rational for the action and key results, including the recent publication of "Limited access to transcranial doppler screening and stroke prevention for children with sickle cell disease in Europe: Results of a multinational EuroBloodNet survey".