About the study
The “National Transfusion Treatment Survey in patients with sickle cell disease (SCD)” is a
prospective longitudinal systemic study that was created in order to evaluate the therapeutic
approach, mainly transfusional, in patients affected by SCD throughout Italy and to improve
the quality of care and implement research.
The survey will evaluate all patients affected by different forms of sickle cell disease (HbS
homozygosis, Thalassoso-drepanocytosis, HbS / HbC compound heterozygosis, other possible
Patients will be selected according with a SCD diagnosis confirmed by standardized
biochemical criteria or by DNA analysis. Patients will be excluded from the study who do not
meet the these requirements, who are unable to understand the protocol or able to give
informed consent in the absence of any legal representative.
All data will be collected through a standard web-based application, which will be completed
by the responsable investigator or by sub-investigators selected by each center, after
registration on the site providing personal data and indicating the affiliation structure.
All data will be subsequently encrypted by the Central Server. The operator will subsequently
be able to access the patient’s clinical data to perform the updates, in order to follow the
patient’s clinical evolution over time. The study will not involve any additional tests
compared to the routine of patient control.