New ERN-EuroBloodNet publication on the limited access to transcranial Doppler screening and stroke prevention for children with sickle cell disease in Europe
Results on the ERN-EuroBloodNet EU mapping exercise conducted to evaluate the availability of this highly specialized procedure has been recently published in Pediatric Blood & Cancer journal.
The article "Limited access to transcranial Doppler screening and stroke prevention for children with sickle cell disease in Europe: Results of a multinational EuroBloodNet survey" has been published in Pediatric Blood & Cancer journal.
With the participation of 81 experts in 77 HCPs from 16 European countries, the mapping provide the first comprehensive picture of access to TCD screening and stroke prevention in European countries. Identifying the potential underlying causes of the lack of effective standardized screening, the publication also addresses possible dedicated actions to cover these needs.
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 Transcranial Doppler (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.
The action has been coordinated by the following ERN-EuroBloodNet experts also co-authoring the publication:
Raffaella Colombatti (AO Padua), Vincenzo Voi (AOU S.Luigi Gonzaga), Victoria Gutierrez Valle (Vall d'Hebron Barcelona Hospital Campus), Daniela Cuzzubbo (Foundation CNR Tuscany Region G. Monasterio), Corrina McMahon (Children's Health Ireland), Maddalena Casale (AOU - Second University - Naples), Maria del Mar Mañú Pereira (Vall d'Hebron Barcelona Hospital Campus), Mirco D'Agnolo (AO Padua), Baba Inusa (Guy's and St Thomas' NHS Foundation Trust) and Mariane de Montalembert (Assistance Publique-Hôpitaux de Paris, Hôpital Necker-Enfants Malades).