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

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

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

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 NurBart 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

^*Corresponding author af dette arbejde

Afdeling for Blodsygdomme CKO

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.

Originalsprog	Engelsk
Artikelnummer	183
Tidsskrift	Orphanet Journal of Rare Diseases
Vol/bind	20
Udgave nummer	1
Sider (fra-til)	183
ISSN	1750-1172
DOI	https://doi.org/10.1186/s13023-025-03683-7
Status	Udgivet - 16 apr. 2025

Adgang til dokumentet

10.1186/s13023-025-03683-7Licens: CC BY

Andre filer og links

Link to publication in Scopus

Citationsformater

Velasco Puyo, P., Christou, S., Campisi, S., Rodríguez-Sánchez, M. A., Reidel, S., Perez-Hoyo, S., Mota, M., Savvidou, I., Rekleiti, A., Salvo, A., Voi, V., Ferrero, G. B., Mandrile, G., Gaglioti, C. M., Cela, E., Ponce-Salas, B., Bardón-Cancho, E. J., Flevari, P., Voskaridou-Dimoula, E., ... Mañú-Pereira, M. D. M. (2025). COVID- 19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet. Orphanet Journal of Rare Diseases, 20(1), 183. Artikel 183. https://doi.org/10.1186/s13023-025-03683-7

Velasco Puyo, P, Christou, S, Campisi, S, Rodríguez-Sánchez, MA, Reidel, S, Perez-Hoyo, S, Mota, M, Savvidou, I, Rekleiti, A, Salvo, A, Voi, V, Ferrero, GB, Mandrile, G, Gaglioti, CM, Cela, E, Ponce-Salas, B, Bardón-Cancho, EJ, Flevari, P, Voskaridou-Dimoula, E, Nur, E, Biemond, BJ, Delaporta, P, Beneitez-Pastor, D, Collado Gimbert, A, Spasiano, A, Besse-Hammer, T, Lafiatis, IG, Dedeken, L, Raso, S, Ruiz-Llobet, A, Bagnato, S, Labarque, V, Glenthøj, A, Ruffo, GB, Guerzoni, ME, Hafraoui, K, Pistoia, L, Rosso, R, Tagliaferri, L, Gonzalez-Urdiales, P, Benghiat, FS, de Montalembert, M, Teles, MJ, Vanderfaeillie, A, Bertoni, E, Cuzzubbo, D, Ferreira, T, Saunders, CJ, Stiakaki, E, Van de Velde, AL, Diamantidis, MD, Kerkhoffs, J-LH, Oliveira, MI, Quota, A, Russo, R, Van Damme, A, Argüello Marina, M, Lorite Reggiori, M, Rijneveld, AW, Rodríguez Gallego, A, Colombatti, R, Iolascon, A, Taher, A, Gulbis, B, Roy, NBA & Mañú-Pereira, MDM 2025, 'COVID- 19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet', Orphanet Journal of Rare Diseases, bind 20, nr. 1, 183, s. 183. https://doi.org/10.1186/s13023-025-03683-7

@article{def0c6a784f2443fb9c4fb7b7856e400,

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

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 = "Humans, COVID-19/epidemiology, Registries, Male, Female, Adult, Middle Aged, Europe/epidemiology, SARS-CoV-2, Adolescent, Young Adult, Anemia, Sickle Cell/epidemiology, Thalassemia/epidemiology, Child, Aged, Risk Factors, Child, Preschool",

author = "{Velasco Puyo}, Pablo and Soteroula Christou and Saveria Campisi and Rodr{\'i}guez-S{\'a}nchez, {Maria A} and Sara Reidel and Santiago Perez-Hoyo and Miriam Mota and Irene Savvidou and Anna Rekleiti and Alessandra Salvo and Vincenzo Voi and Ferrero, {Giovanni Battista} and Giorgia Mandrile and Gaglioti, {Carmen Maria} and Elena Cela and Beatriz Ponce-Salas and Bard{\'o}n-Cancho, {Eduardo J} and Pagona Flevari and Ersi Voskaridou-Dimoula and Erfan Nur and Biemond, {Bart J} and Polynexi Delaporta and David Beneitez-Pastor and {Collado Gimbert}, Anna and Anna Spasiano and Tatiana Besse-Hammer and Lafiatis, {Ioannis G} and Laurence Dedeken and Simona Raso and Anna Ruiz-Llobet and Sabrina Bagnato and Veerle Labarque and Andreas Glenth{\o}j and Ruffo, {Giovan Battista} and Guerzoni, {Maria Elena} and Kaoutar Hafraoui and Laura Pistoia and Rosamaria Rosso and Laura Tagliaferri and Paula Gonzalez-Urdiales and Benghiat, {Fleur Samantha} and {de Montalembert}, Mariane and Teles, {Maria Jose} and Anna Vanderfaeillie and Elisa Bertoni and Daniela Cuzzubbo and Teresa Ferreira and Saunders, {Christopher J} and Eftichia Stiakaki and {Van de Velde}, {Ann L} and Diamantidis, {Michael D} and Kerkhoffs, {Jean-Louis H} and Oliveira, {Marisa I} and Alessandra Quota and Roberta Russo and {Van Damme}, An and {Arg{\"u}ello Marina}, Mar{\'i}a and {Lorite Reggiori}, Mikael and Rijneveld, {Anita W} and {Rodr{\'i}guez Gallego}, Alexis and Raffaella Colombatti and Achille Iolascon and Ali Taher and B{\'e}atrice Gulbis and Roy, {No{\'e}mi B A} and Ma{\~n}{\'u}-Pereira, {Mar{\'i}a Del Mar}",

note = "{\textcopyright} 2025. The Author(s).",

year = "2025",

month = apr,

day = "16",

doi = "10.1186/s13023-025-03683-7",

language = "English",

volume = "20",

pages = "183",

journal = "Orphanet Journal of Rare Diseases",

issn = "1750-1172",

publisher = "BioMed Central Ltd",

number = "1",

}

TY - JOUR

T1 - COVID- 19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet

AU - Velasco Puyo, Pablo

AU - Christou, Soteroula

AU - Campisi, Saveria

AU - Rodríguez-Sánchez, Maria A

AU - Reidel, Sara

AU - Perez-Hoyo, Santiago

AU - Mota, Miriam

AU - Savvidou, Irene

AU - Rekleiti, Anna

AU - Salvo, Alessandra

AU - Voi, Vincenzo

AU - Ferrero, Giovanni Battista

AU - Mandrile, Giorgia

AU - Gaglioti, Carmen Maria

AU - Cela, Elena

AU - Ponce-Salas, Beatriz

AU - Bardón-Cancho, Eduardo J

AU - Flevari, Pagona

AU - Voskaridou-Dimoula, Ersi

AU - Nur, Erfan

AU - Biemond, Bart J

AU - Delaporta, Polynexi

AU - Beneitez-Pastor, David

AU - Collado Gimbert, Anna

AU - Spasiano, Anna

AU - Besse-Hammer, Tatiana

AU - Lafiatis, Ioannis G

AU - Dedeken, Laurence

AU - Raso, Simona

AU - Ruiz-Llobet, Anna

AU - Bagnato, Sabrina

AU - Labarque, Veerle

AU - Glenthøj, Andreas

AU - Ruffo, Giovan Battista

AU - Guerzoni, Maria Elena

AU - Hafraoui, Kaoutar

AU - Pistoia, Laura

AU - Rosso, Rosamaria

AU - Tagliaferri, Laura

AU - Gonzalez-Urdiales, Paula

AU - Benghiat, Fleur Samantha

AU - de Montalembert, Mariane

AU - Teles, Maria Jose

AU - Vanderfaeillie, Anna

AU - Bertoni, Elisa

AU - Cuzzubbo, Daniela

AU - Ferreira, Teresa

AU - Saunders, Christopher J

AU - Stiakaki, Eftichia

AU - Van de Velde, Ann L

AU - Diamantidis, Michael D

AU - Kerkhoffs, Jean-Louis H

AU - Oliveira, Marisa I

AU - Quota, Alessandra

AU - Russo, Roberta

AU - Van Damme, An

AU - Argüello Marina, María

AU - Lorite Reggiori, Mikael

AU - Rijneveld, Anita W

AU - Rodríguez Gallego, Alexis

AU - Colombatti, Raffaella

AU - Iolascon, Achille

AU - Taher, Ali

AU - Gulbis, Béatrice

AU - Roy, Noémi B A

AU - Mañú-Pereira, María Del Mar

PY - 2025/4/16

Y1 - 2025/4/16

N2 - 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.

AB - 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.

KW - Humans

KW - COVID-19/epidemiology

KW - Registries

KW - Male

KW - Female

KW - Adult

KW - Middle Aged

KW - Europe/epidemiology

KW - SARS-CoV-2

KW - Adolescent

KW - Young Adult

KW - Anemia, Sickle Cell/epidemiology

KW - Thalassemia/epidemiology

KW - Child

KW - Aged

KW - Risk Factors

KW - Child, Preschool

UR - http://www.scopus.com/inward/record.url?scp=105003116224&partnerID=8YFLogxK

U2 - 10.1186/s13023-025-03683-7

DO - 10.1186/s13023-025-03683-7

M3 - Journal article

C2 - 40241127

SN - 1750-1172

VL - 20

SP - 183

JO - Orphanet Journal of Rare Diseases

JF - Orphanet Journal of Rare Diseases

IS - 1

M1 - 183

ER -

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

Abstract

Adgang til dokumentet

Andre filer og links

Fingeraftryk

Citationsformater