Pablo Velasco Puyo, Soteroula Christou, Saveria Campisi, Maria A Rodríguez-Sánchez, Sara Reidel, Santiago Perez-Hoyo, Miriam Mota, Irene Savvidou, Anna Rekleiti, Alessandra Salvo, Vincenzo Voi, Giovanni Battista Ferrero, Giorgia Mandrile, Carmen Maria Gaglioti, Elena Cela, Beatriz Ponce-Salas, Eduardo J Bardón-Cancho, Pagona Flevari, Ersi Voskaridou-Dimoula, Erfan Nur, Bart J Biemond, Polynexi Delaporta, David Beneitez-Pastor, Anna Collado Gimbert, Anna Spasiano, Tatiana Besse-Hammer, Ioannis G Lafiatis, Laurence Dedeken, Simona Raso, Anna Ruiz-Llobet, Sabrina Bagnato, Veerle Labarque, Andreas Glenthøj, Giovan Battista Ruffo, Maria Elena Guerzoni, Kaoutar Hafraoui, Laura Pistoia, Rosamaria Rosso, Laura Tagliaferri, Paula Gonzalez-Urdiales, Fleur Samantha Benghiat, Mariane de Montalembert, Maria Jose Teles, Anna Vanderfaeillie, Elisa Bertoni, Daniela Cuzzubbo, Teresa Ferreira, Christopher J Saunders, Eftichia Stiakaki, Ann L Van de Velde, Michael D Diamantidis, Jean-Louis H Kerkhoffs, Marisa I Oliveira, Alessandra Quota, Roberta Russo, An Van Damme, María Argüello Marina, Mikael Lorite Reggiori, Anita W Rijneveld, Alexis Rodríguez Gallego, Raffaella Colombatti, Achille Iolascon, Ali Taher, Béatrice Gulbis, Noémi B A Roy, María Del Mar Mañú-Pereira
{"title":"COVID- 19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet.","authors":"Pablo Velasco Puyo, Soteroula Christou, Saveria Campisi, Maria A Rodríguez-Sánchez, Sara Reidel, Santiago Perez-Hoyo, Miriam Mota, Irene Savvidou, Anna Rekleiti, Alessandra Salvo, Vincenzo Voi, Giovanni Battista Ferrero, Giorgia Mandrile, Carmen Maria Gaglioti, Elena Cela, Beatriz Ponce-Salas, Eduardo J Bardón-Cancho, Pagona Flevari, Ersi Voskaridou-Dimoula, Erfan Nur, Bart J Biemond, Polynexi Delaporta, David Beneitez-Pastor, Anna Collado Gimbert, Anna Spasiano, Tatiana Besse-Hammer, Ioannis G Lafiatis, Laurence Dedeken, Simona Raso, Anna Ruiz-Llobet, Sabrina Bagnato, Veerle Labarque, Andreas Glenthøj, Giovan Battista Ruffo, Maria Elena Guerzoni, Kaoutar Hafraoui, Laura Pistoia, Rosamaria Rosso, Laura Tagliaferri, Paula Gonzalez-Urdiales, Fleur Samantha Benghiat, Mariane de Montalembert, Maria Jose Teles, Anna Vanderfaeillie, Elisa Bertoni, Daniela Cuzzubbo, Teresa Ferreira, Christopher J Saunders, Eftichia Stiakaki, Ann L Van de Velde, Michael D Diamantidis, Jean-Louis H Kerkhoffs, Marisa I Oliveira, Alessandra Quota, Roberta Russo, An Van Damme, María Argüello Marina, Mikael Lorite Reggiori, Anita W Rijneveld, Alexis Rodríguez Gallego, Raffaella Colombatti, Achille Iolascon, Ali Taher, Béatrice Gulbis, Noémi B A Roy, María Del Mar Mañú-Pereira","doi":"10.1186/s13023-025-03683-7","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Procedures: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":19651,"journal":{"name":"Orphanet Journal of Rare Diseases","volume":"20 1","pages":"183"},"PeriodicalIF":3.4000,"publicationDate":"2025-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12001635/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Orphanet Journal of Rare Diseases","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s13023-025-03683-7","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
引用次数: 0
Abstract
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 pandemic's early stages.
Procedures: 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.
Results: 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.
Conclusion: 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.
期刊介绍:
Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.