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. 2025 Apr 16;20(1):183.
doi: 10.1186/s13023-025-03683-7.

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

Pablo Velasco Puyo  1 , Soteroula Christou  2 , Saveria Campisi  3 , Maria A Rodríguez-Sánchez  4 , Sara Reidel  4 , Santiago Perez-Hoyo  5 , Miriam Mota  5 , Irene Savvidou  2 , Anna Rekleiti  2 , Alessandra Salvo  3 , Vincenzo Voi  6 , Giovanni Battista Ferrero  6 , Giorgia Mandrile  6 , Carmen Maria Gaglioti  6 , Elena Cela  7 , Beatriz Ponce-Salas  7 , Eduardo J Bardón-Cancho  7 , Pagona Flevari  8 , Ersi Voskaridou-Dimoula  8 , Erfan Nur  9 , Bart J Biemond  9 , Polynexi Delaporta  10   11 , David Beneitez-Pastor  12 , Anna Collado Gimbert  13 , Anna Spasiano  14 , Tatiana Besse-Hammer  15 , Ioannis G Lafiatis  16 , Laurence Dedeken  17 , Simona Raso  18 , Anna Ruiz-Llobet  19 , Sabrina Bagnato  20 , Veerle Labarque  21   22 , Andreas Glenthøj  23 , Giovan Battista Ruffo  24 , Maria Elena Guerzoni  25 , Kaoutar Hafraoui  26 , Laura Pistoia  27 , Rosamaria Rosso  28 , Laura Tagliaferri  29 , Paula Gonzalez-Urdiales  30 , Fleur Samantha Benghiat  31 , Mariane de Montalembert  32 , Maria Jose Teles  33 , Anna Vanderfaeillie  34 , Elisa Bertoni  35 , Daniela Cuzzubbo  36 , Teresa Ferreira  37 , Christopher J Saunders  38 , Eftichia Stiakaki  39 , Ann L Van de Velde  40 , Michael D Diamantidis  41 , Jean-Louis H Kerkhoffs  42 , Marisa I Oliveira  43 , Alessandra Quota  44 , Roberta Russo  45   46 , An Van Damme  47 , María Argüello Marina  48 , Mikael Lorite Reggiori  49 , Anita W Rijneveld  50 , Alexis Rodríguez Gallego  51   52 , Raffaella Colombatti  53 , Achille Iolascon  45   46 , Ali Taher  54 , Béatrice Gulbis  55 , Noémi B A Roy  56   57 , María Del Mar Mañú-Pereira  13   4
Affiliations

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

Pablo Velasco Puyo et al. Orphanet J Rare Dis. .

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.

Keywords: COVID- 19; Europe; Red blood cell disorders; Sickle cell disease; Thalassemia.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: The Research Ethics Committee of Vall d'Hebron Hospital has confirmed that this exceptional case justifies the waiver of informed consent (Ethics Committee approval by University Hospital Vall d'Hebron dated 7 th April 2020 (PR(AG)215/2020/VHI-ERN- 2020 - 00)), and it has subsequently been approved in the various countries and centers involved in the registry. Consent for publication: Not applicable. Competing interests: Andreas Glenthøj is part of the Advisory board of Agios, Bluebird bio, Bristol Myers Squibb, Novartis, Novo Nordisk, Pharmacosmos and Vertex Pharmaceuticals and also provides Research support to Agios, Bristol Myers Squibb, Novo Nordisk, Saniona and Sanofi. Mariane de Montalembert is part of the Steering Committtes of Addmedica, Vertex and Novartis. Raffaella Colombatti is part of the Advisory Board of NovoNordisk, Novartis, AddMedica, Pfizer, Forma Therapeutics, Global Blood Therapeutics and Vertex. Ali Taher performs consultancy activities and received research funding from Novartis Pharmaceuticals, Bristol-Myers Squibb (Celgene), Vifor, Pharmacosmos and Agios. Béatrice Gulbis has a Contract with EuroBloodNet Association (RADeep): the payments are made to her institution. For the remaining authors, no relevant conflicts of interest were declared. Mar Mañu is an editor of the Orphanet Journal of Rare Diseases.

Figures

Fig. 1
Fig. 1
Distribution of the SARS-CoV- 2 infections by country. A total of 43 centres from 10 European countries are included in the registry (Belgium, Cyprus, Denmark, France, Germany, Greece, Italy, Portugal, Spain and The Netherlands). Red bars represent infections in SCD patients and blue TMI patients’s infections
Fig. 2
Fig. 2
Incidence of SARS-CoV- 2 infections in SCD and TMI patients by country. Data from the RBCDs—COVID- 19 European collaborative registry on 642 patients with RBCDs and SARS-CoV- 2 infection, recorded among 7713 patients with SCD and TDT/NTDT who were monitored at centers participating in the RADeep registry during that period.The lighter bars represent symptomatic infections (not grade 1) and the darker ones represent all grades of infection, including asymptomatic ones. The color red represents infections in SCD and the color blue in TMI
Fig. 3
Fig. 3
Weekly evolution of COVID- 19 Incidence and Severity in Patients with RBCDs Over Time. Weekly incidence and severity of registered patients with RBCDs over time. The blue color represents severe cases, while the red color indicates mild cases
Fig. 4
Fig. 4
Events triggered during the SARS-CoV2 infection in SCD and TMI patients. Illustration by Jesús Sánchez.'N'represents the number of patients who experienced each event. The red percentage indicates patients with SCD who experienced the event during SARS-CoV- 2 infection, while the orange percentage indicates patients with TMI who experienced the event during SARS-CoV- 2 infection. We did not include TMI in the representation of events exclusive to SCD, such as Acute Chest Syndrome, Vasocclusive Pain Crisis, and Splenic Sequestration. SCD: Sickle cell disease. TMI: Thalasemia major o intermedia
Fig. 5
Fig. 5
Distribution of cases according to age (years) and genotype of SCD patients (severe genotype SS/SB0 and mild genotype SC/SB +) and phenotype of TMI (Thalassemia Major and Intermedia). The blue triangles represent severe cases and the red circles represent mild cases. SCD: Sickle Cell Disease. SS: Homozygous SCD. SB0: SCD with beta-zero thalassemia. SB + : SCD double heterozygote with beta-plus thalassemia. SC: SCD double heterozygote with hemoglobin S and C. TMI: Thalassemia Major and Intermediate
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