Alessandra Quota

Narratives unveil knowledge and awareness-related issue, reinforcing patients’ self-identity in sickle cell disease

De Franceschi L, Carla Galvani, Giovan Battista Ruffo, Raffaella Colombatti et autres

BACKGROUND: Sickle cell disease (SCD) increasingly requires a holistic approach. Narratives have been used to complement clinical and observational findings related to quality of life (QoL). The "Sickle Cell Anemia Narrations" project aimed to help frame the illness burden and QoL of …

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Incorporating national disease burden in GBD estimates of haemoglobinopathies in Italy

Barbara Gianesin, Frédéric B. Piel, Lucia De Franceschi, Cecilia Adami et autres

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Oxford Hip and Shoulder Scores as Potential Tools for the Early Detection of Avascular Necrosis in Apparently Unaffected Sites in Sickle Cell Disease: Results from a Prospective Cohort Study

Maddalena Casale, Giuseppe Toro, Federica Porcelli, Vincenzo Spadola et autres

Objectives: Sickle Cell Disease (SCD) has a significant impact on the musculoskeletal system. The use of the Oxford Hip (OHS) and Shoulder score (OSS) as patient-reported outcome measures (PROMs) revealed a high rate of long-term impairment in joints with a pre-existing diagnosis …

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COVID- 19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet

Pablo Velasco, Soteroula Christou, Saveria Campisi, Maria A. Rodríguez-Sánchez et autres

BACKGROUND: Despite several publications covering patients from multiple centers, no international registry covered all patients with red blood cell diseases (RBCD) affected by COVID- 19. The ERN-EuroBloodNet's registry provided real-time registration of SARS-CoV- 2 patients with RBCD, promoting timely disease-specific knowledge sharing …

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Biatrial and Biventricular Reference Ranges Based on Cardiac Magnetic Resonance in Sickle Cell Disease Patients Without Heart Damage

Laura Pistoia, Antonella Meloni, Vincenzo Positano, Alessandra Quota et autres

BACKGROUND/OBJECTIVES: We aimed to establish biatrial and biventricular reference ranges using cardiac magnetic resonance (CMR) parameters in SCD patients without heart damage. METHODS: This study compared CMR parameters, quantified by cine SSFP sequences, in 48 adult SCD patients without apparent cardiac involvement …

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Long‐term outcomes of avascular necrosis in sickle cell disease using joint‐specific patient‐reported outcome measures: Results from a multicentre study

Maddalena Casale, Giuseppe Toro, Federica Porcelli, Alessandra Quota et autres

Avascular necrosis (AVN) is a prevalent and progressive complication in young patients with sickle cell disease (SCD), but no study evaluated the long-term subjective and objective outcome measures. Oxford hip score (OHS) and Oxford shoulder scores (OSS) are validated joint-specific patient-reported outcome …

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COVID-19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet

Pablo Velasco, Soteroula Christou, Saveria Campisi, Maria A. Rodríguez-Sánchez et autres

Background Despite several publications covering patients from multiple centers, no international registry covered all patients with red blood cell diseases (RBCD) affected by COVID-19. The ERN-EuroBloodNet’s registry provided real-time registration of SARS-CoV-2 patients with RBCD, promoting timely disease-specific knowledge sharing during the …

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Management of the Sickle Cell Trait: An Opinion by Expert Panel Members

Valeria Maria Pinto, Lucia De Franceschi, Barbara Gianesin, Antonia Gigante et autres

The number of individuals with the sickle cell trait exceeds 300 million worldwide, making sickle cell disease one of the most common monogenetic diseases globally. Because of the high frequency of sickle cell disease, reproductive counseling is of crucial importance. In addition, …

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Prognostic value of multiparametric cardiac magnetic resonance in sickle cell patients

Antonella Meloni, Laura Pistoia, Alessandra Quota, Giuseppe Messina et autres

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Chronic Hepatitis C Virus Infection Is Associated with an Increased Risk of Diabetes Mellitus in Thalassemia Major

Paolo Ricchi, Laura Pistoia, Anna Spasiano, Sabrina Armari et autres

Introduction. Hepatitis C virus (HCV) infection is associated with a number of important extrahepatic manifestations. The association between HCV infection and the occurrence of diabetes mellitus remains controversial. Aim. The aim of this multicentric study was to prospectively assess the relationship between …

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Morbidity and mortality of sickle cell disease patients is unaffected by splenectomy: evidence from three decades of follow-up in a high-income setting

Valeria Maria Pinto, Barbara Gianesin, Frédéric B. Piel, Filomena Longo et autres

Not available.

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The use of hydroxyurea in the real life of MIOT network: an observational study

Paolo Ricchi, Antonella Meloni, Paolo Rigano, Laura Pistoia et autres

BACKGROUND: Hydroxyurea (HU) has been widely used in clinical practice to manage patients with non-transfusion dependent thalassemia (NTDT). Few data are available about the effects of its administration in Italian patients. We assessed hematological and non-hematological outcomes following short- and long-term exposure …

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