ERN-EuroBloodNet Registry on Patients With Rare Red Blood Cell Defects and COVID-19

Summary

Patients with red blood cell disorders (RBCDs), such as Sickle cell disease (SCD) and Thalassemia, are chronic, life-threatening conditions that can become multi-organ complications over time, and are likely at an increased risk of COVID-19-related complications. Patients at the highest risk include the elderly (\>50 in our population), those with a history of respiratory or cardiac disease and those with other comorbidities. Several patients affected by RBCDs undergo splenectomy as therapeutic option to improve their level of hemoglobin concentration. Splenectomized patients, or in the case of SCD with functional hyposplenism, are more vulnerable to bacterial infections / superinfections after viral infection. Acute pulmonary syndrome (ACS) is the main cause of morbidity in SCD in middle-high income countries, and is often triggered by infectious events. Currently, there is no literature on the subject. Thus, any recommendation available comes from the experience gained with previous Coronaviruses infections. Accordingly, the correct treatment and management of infection by Coronavirus SARS-COV-2 (COVID-19) in patients affected by RBCDs may be challenging given the rapid spread of the pandemic and limited literature so far, especially in some countries. Accordingly, there is an urgent need to pool evidence in a unique repository on patients affected by RBCDs and COVID-19 in order to reach critical numbers to facilitate the medical decision making process across Europe.

The Registry on patients with rare RBCDs and COVID-19 is an initiative conceived in the core of the European Reference Network on Rare Hematological Diseases (ERN-EuroBloodNet, FPA 739541, www.eurobloodnet.eu) aiming at supporting medical practice of COVID-19 in these patients by gathering evidence on pediatric and adult COVID-19 confirmed cases in RBCDs across Europe.

Conditions

• Hemoglobinopathies
• Sickle Cell Disease
• Sickle Cell Anemia
• Sickle Beta Thalassemia
• Sickle-Cell; Hemoglobinopathy
• Sickle Cell Hemoglobin C
• Sickle Cell Hemoglobin D
• Sickle Cell-Hemoglobin E Disease
• Beta-Thalassemia
• Beta Thalassemia Major
• Beta Thalassemia Intermedia
• Dominant Beta-Thalassemia
• Hereditary Persistence of Fetal Hemoglobin Thalassemia
• Delta-Beta Thalassaemia
• Haemoglobin C-Beta-Thalassaemia Syndrome
• Hemoglobin E-Beta Thalassemia
• Alpha-Thalassemia
• Hemoglobin H Disease
• Hemoglobin Barts Hydrops
• Enzyme Disorder; Anemia
• Membranes; Disorder
• Elliptocytosis, Hereditary
• Stomatocytosis
• Spherocytosis, Hereditary

Interventions

OTHER

Non applicable, is a patient registry

Non applicable, is a patient registry

Sponsors & Collaborators

• European Georges Pompidou Hospital

  collaborator OTHER

• Hospital General Universitario Gregorio Marañon

  collaborator OTHER

• Hospital Vall d'Hebron

  collaborator OTHER

• Unidade Local de Saúde de Coimbra, EPE

  collaborator OTHER

• University Hospital Freiburg

  collaborator OTHER

• Azienda Ospedaliera di Padova

  collaborator OTHER

• Hôpital Necker-Enfants Malades

  collaborator OTHER

• Guy's and St Thomas' NHS Foundation Trust

  collaborator OTHER

• Erasme University Hospital

  collaborator OTHER

• Aghia Sophia Children's Hospital of Athens

  collaborator OTHER

• Cyprus Institute of Neurology and Genetics

  collaborator OTHER

• University Hospital Heidelberg

  collaborator OTHER

• Children's Health Ireland

  collaborator OTHER_GOV

• San Luigi Gonzaga Hospital

  collaborator OTHER

• Oxford University Hospitals NHS Trust

  collaborator OTHER

• UMC Utrecht

  collaborator OTHER

• General Hospital of Athens Elpis

  collaborator OTHER

• Amsterdam UMC

  collaborator OTHER

• Brno University Hospital

  collaborator OTHER

• Azienda Ospedaliera Ospedali Riuniti Villa Sofia Cervello

  collaborator OTHER

• University Hospital, Gentofte, Copenhagen

  collaborator OTHER

• Institute of Hematology and Blood Transfusion, Czech Republic

  collaborator OTHER

• Universitaire Ziekenhuizen KU Leuven

  collaborator OTHER

• Palacky University

  collaborator OTHER

• Hospital Universitari Vall d'Hebron Research Institute

  lead OTHER

Principal Investigators

• María del Mar Mañú Pereira, PhD · Vall d'Hebron Institut de Recerca, Barcelona (Spain) and ERN-EuroBloodNet

• Pablo Velasco Puyó, MD · Vall d'Hebron University Hospital, Barcelona (Spain)

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2020-04-15

Primary Completion

2023-06-30

Completion

2023-12-31

Countries

• Spain

Study Locations