Velasco Puyo Pablo, Christou Soteroula, Campisi Saveria, Rodríguez-Sánchez Maria A, Reidel Sara, Perez-Hoyo Santiago, Mota Miriam, Savvidou Irene, Rekleiti Anna, Salvo Alessandra, Voi Vincenzo, Ferrero Giovanni Battista, Mandrile Giorgia, Gaglioti Carmen Maria, Cela Elena, Ponce-Salas Beatriz, Bardón-Cancho Eduardo J, Flevari Pagona, Voskaridou-Dimoula Ersi, Nur Erfan, Biemond Bart J, Delaporta Polynexi, Beneitez-Pastor David, Collado Gimbert Anna, Spasiano Anna, Besse-Hammer Tatiana, Lafiatis Ioannis G, Dedeken Laurence, Raso Simona, Ruiz-Llobet Anna, Bagnato Sabrina, Labarque Veerle, Glenthøj Andreas, Ruffo Giovan Battista, Guerzoni Maria Elena, Hafraoui Kaoutar, Pistoia Laura, Rosso Rosamaria, Tagliaferri Laura, Gonzalez-Urdiales Paula, Benghiat Fleur Samantha, de Montalembert Mariane, Teles Maria Jose, Vanderfaeillie Anna, Bertoni Elisa, Cuzzubbo Daniela, Ferreira Teresa, Saunders Christopher J, Stiakaki Eftichia, Van de Velde Ann L, Diamantidis Michael D, Kerkhoffs Jean-Louis H, Oliveira Marisa I, Quota Alessandra, Russo Roberta, Van Damme An, Argüello Marina María, Lorite Reggiori Mikael, Rijneveld Anita W, Rodríguez Gallego Alexis, Colombatti Raffaella, Iolascon Achille, Taher Ali, Gulbis Béatrice, Roy Noémi B A, Mañú-Pereira María Del Mar
Pediatric Oncology and Hematology, Vall d'Hebron Barcelona Hospital, Passeig Vall Hebron 129, 08035, Barcelona, Spain.
Thalassaemia Clinic, Archbishop Makarios III Hospital (NAMIII), Nicosia, Cyprus.
Orphanet J Rare Dis. 2025 Apr 16;20(1):183. doi: 10.1186/s13023-025-03683-7.
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 pandemic's early stages.
The study evaluated patient distribution, the infection across different RBCDs, and severity risk factors across similar healthcare systems, using data collected from the ERN-EuroBloodNet's REDCap platform.
From April 2020 to April 2023, 681 infections were recorded among 663 patients, of which 373 had transfusion-dependent thalassemia or non-transfusion-dependent thalassemia (TDT/NTDT), and 269 had sickle cell disease (SCD). SCD patients had a higher incidence of COVID- 19 than those with TDT/NTDT (10.5 vs. 4.8 COVID/100 patients). Notably, 92% of the cases were mild, with neither age nor the specific RBCD affecting severity. The number of comorbidities, notably obesity and hypertension, that patients had prior to infection was associated with more severe COVID- 19. During the infection, the presence of vaso-occlusive crises, acute chest syndrome, kidney failure, and ground-glass opacities on chest tomography scans were associated with a more severe clinical picture. The vaccination rate (32%) mirrored that of the general population and showed a protective effect against severe COVID- 19. The observed mortality rate was 0.7%, aligning with Europe's general population.
SARS-CoV- 2 infection in SCD and TDT/NTDT patients is mild and without higher mortality than the general population. The ERN-Eurobloodnet's registry collaborative structure exemplifies the power of international cooperation in tackling rare diseases, especially during health emergencies.
尽管有几篇涵盖多个中心患者的出版物,但尚无国际登记处涵盖所有受新冠病毒-19影响的红细胞疾病(RBCD)患者。ERN-欧洲血液网的登记处提供了感染新冠病毒-19的RBCD患者的实时登记,在疫情早期促进了及时的疾病特异性知识共享。
本研究使用从ERN-欧洲血液网的REDCap平台收集的数据,评估了患者分布、不同RBCD中的感染情况以及类似医疗系统中的严重程度风险因素。
2020年4月至2023年4月期间,663名患者中记录到681例感染,其中373例患有输血依赖型地中海贫血或非输血依赖型地中海贫血(TDT/NTDT),269例患有镰状细胞病(SCD)。SCD患者的新冠病毒-19发病率高于TDT/NTDT患者(每100名患者中分别为10.5例和4.8例新冠感染)。值得注意的是,92%的病例为轻症,年龄和特定的RBCD均不影响严重程度。患者感染前的合并症数量,尤其是肥胖和高血压,与更严重的新冠病毒-19相关。感染期间,血管闭塞性危象、急性胸综合征、肾衰竭以及胸部断层扫描上的磨玻璃影与更严重的临床表现相关。疫苗接种率(32%)与普通人群相似,并显示出对严重新冠病毒-19的保护作用。观察到的死亡率为0.7%,与欧洲普通人群一致。
SCD和TDT/NTDT患者的新冠病毒-19感染为轻症,死亡率不高于普通人群。ERN-欧洲血液网的登记处协作结构体现了国际合作在应对罕见疾病方面的力量,尤其是在卫生紧急情况期间。