Sickle cell disease landscape and challenges in the EU: the ERN-EuroBloodNet perspective
Publikation: Bidrag til tidsskrift › Review › Forskning › fagfællebedømt
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Sickle cell disease landscape and challenges in the EU : the ERN-EuroBloodNet perspective. / Mañú Pereira, María del Mar; Colombatti, Raffaella; Alvarez, Federico; Bartolucci, Pablo; Bento, Celeste; Brunetta, Angelo Loris; Cela, Elena; Christou, Soteroula; Collado, Anna; de Montalembert, Mariane; Dedeken, Laurence; Fenaux, Pierre; Galacteros, Frédéric; Glenthøj, Andreas; Gutiérrez Valle, Victoria; Kattamis, Antonis; Kunz, Joachim; Lobitz, Stephan; McMahon, Corrina; Pellegrini, Mariangela; Reidel, Sara; Russo, Giovanna; Santos Freire, Miriam; van Beers, Eduard; Kountouris, Petros; Gulbis, Béatrice.
I: The Lancet Haematology, Bind 10, Nr. 8, 2023, s. e687-e694.Publikation: Bidrag til tidsskrift › Review › Forskning › fagfællebedømt
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TY - JOUR
T1 - Sickle cell disease landscape and challenges in the EU
T2 - the ERN-EuroBloodNet perspective
AU - Mañú Pereira, María del Mar
AU - Colombatti, Raffaella
AU - Alvarez, Federico
AU - Bartolucci, Pablo
AU - Bento, Celeste
AU - Brunetta, Angelo Loris
AU - Cela, Elena
AU - Christou, Soteroula
AU - Collado, Anna
AU - de Montalembert, Mariane
AU - Dedeken, Laurence
AU - Fenaux, Pierre
AU - Galacteros, Frédéric
AU - Glenthøj, Andreas
AU - Gutiérrez Valle, Victoria
AU - Kattamis, Antonis
AU - Kunz, Joachim
AU - Lobitz, Stephan
AU - McMahon, Corrina
AU - Pellegrini, Mariangela
AU - Reidel, Sara
AU - Russo, Giovanna
AU - Santos Freire, Miriam
AU - van Beers, Eduard
AU - Kountouris, Petros
AU - Gulbis, Béatrice
N1 - Publisher Copyright: © 2023 Elsevier Ltd
PY - 2023
Y1 - 2023
N2 - Sickle cell disease is a hereditary multiorgan disease that is considered rare in the EU. In 2017, the Rare Diseases Plan was implemented within the EU and 24 European Reference Networks (ERNs) were created, including the ERN on Rare Haematological Diseases (ERN-EuroBloodNet), dedicated to rare haematological diseases. This EU initiative has made it possible to accentuate existing collaborations and create new ones. The project also made it possible to list all the needs of people with rare haematological diseases not yet covered health-care providers in the EU to allow optimised care of individuals with rare pathologies, including sickle cell disease. This Viewpoint is the result of joint work within 12 EU member states (ie, Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Portugal, Spain, Sweden, and The Netherlands), all members of the ERN-EuroBloodNet. We describe the role of the ERN-EuroBloodNet to improve the overall approach to and the management of individuals with sickle cell disease in the EU through specific on the pooling of expertise, knowledge, and best practices; the development of training and education programmes; the strategy for systematic gathering and standardisation of clinical data; and its reuse in clinical research. Epidemiology and research strategies from ongoing implementation of the Rare Anaemia Disorders European Epidemiological Platform is depicted.
AB - Sickle cell disease is a hereditary multiorgan disease that is considered rare in the EU. In 2017, the Rare Diseases Plan was implemented within the EU and 24 European Reference Networks (ERNs) were created, including the ERN on Rare Haematological Diseases (ERN-EuroBloodNet), dedicated to rare haematological diseases. This EU initiative has made it possible to accentuate existing collaborations and create new ones. The project also made it possible to list all the needs of people with rare haematological diseases not yet covered health-care providers in the EU to allow optimised care of individuals with rare pathologies, including sickle cell disease. This Viewpoint is the result of joint work within 12 EU member states (ie, Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Portugal, Spain, Sweden, and The Netherlands), all members of the ERN-EuroBloodNet. We describe the role of the ERN-EuroBloodNet to improve the overall approach to and the management of individuals with sickle cell disease in the EU through specific on the pooling of expertise, knowledge, and best practices; the development of training and education programmes; the strategy for systematic gathering and standardisation of clinical data; and its reuse in clinical research. Epidemiology and research strategies from ongoing implementation of the Rare Anaemia Disorders European Epidemiological Platform is depicted.
U2 - 10.1016/S2352-3026(23)00182-5
DO - 10.1016/S2352-3026(23)00182-5
M3 - Review
C2 - 37451300
AN - SCOPUS:85166442729
VL - 10
SP - e687-e694
JO - The Lancet Haematology
JF - The Lancet Haematology
SN - 2352-3026
IS - 8
ER -
ID: 397756329