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

The article was recently published in the Orphanet Journal of Rare Diseases

We are glad to share that the article entitled "COVID-19 in patients affected by red blood cell disorders, results from the European registry ERN-EuroBloodNet" was recently published in the Orphanet Journal of Rare Diseases.

The study, co-led by Dr Pablo Velasco Puyó (Pediatric Oncology and Hematology, Vall d'Hebron Hospital) and Dr María del Mar Mañú Pereira (Scientific Coordinator of the ERN-EuroBloodNet), provides an important contribution to the understanding of the impact of SARS-CoV-2 on individuals with Red Blood Cell Disorders (RBCD), such as Thalassemia and Sickle Cell Disease (SCD). This fruitful work was carried out in the framework of the ERN-EuroBloodNet and RADeep, the Rare Anaemia Disorders European Epidemiologial platform.

This is the largest European registry to date, including 681 infections in 663 patients from 43 centres in 10 EU countries. The analysis sheds light on the incidence, profile, and outcomes of these patients during the pandemic.

Throughout the initial three years of the pandemic, the ERN-EuroBloodNet and RADeep platform served as a critical real-time repository for data sharing and decision support for treating physicians. The comprehensive analysis extends the insights presented at major conferences such as ASH 2021 and EHA 2022, providing a detailed description of the patients affected and the risk factors associated with severe infection.

The study highlights the utility of such a registry not only for crisis management, but also as a model for future health emergencies. The ERN-EuroBloodNet platform has successfully overcome the complex logistical, ethical, and legal challenges.

Find out more about the study, the results and the authors HERE.

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