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Journal Articles

Thalassemia in europe: A cross-border real-world data analysis from the radeep registry

Free
Anna Collado Gimbert, Sara Reidel, Raffaella Colombatti, Eduard Van Beers, Paola Bianchi, Stella Tamana, Angelo Loris Brunetta, Dore Peereboom, Giovanna Russo, Daniela Cuzzubbo, Elena Cela, José Manuel Marco Sánchez, Sarah Wambacq, Dedeken Laurence, Bart Biemond, Soteroula Christou, Iren Savvides, Andreas Glenthoej, Antonis Kattamis, Ilona Binenbaum, María Pilar Nicolás, Iñigo de Miguel Beriain, Alexis Rodriguez Gallego, Angela Menarguez Lopez, Maximo Tartaglia, Nuria Torquet Luna, Roberta Trapanese, Marleen Ausloos, Betzabel Cajiao Garcia, Anna Minaidou, Kian Haseli, Efthymia Panteli, Elisabetta Mezzalira, Petros Kountouris, Béatrice Gulbis, Maria Del Mar Mañú Pereira
Journal: Blood
Blood (2025) 146 (Supplement 1): 4696.
https://doi.org/10.1182/blood-2025-4696
Published: 2025
Journal Articles

Data validation and quality framework for building a european multimodal real-world dataset for clinical outcome research in sickle cell disease

Free
Sara Reidel, Pablo Bartolucci, Bart Biemond, Betzabel Cajiao Garcia, Elena Cela, Anna Collado Gimbert, Raffaella Colombatti, Mariane de Montalembert, Karin Fijnvandraat, Petros Kountouris, Vincent De Pierrefeu, Sandra Manceau, José Manuel Marco Sánchez, Angela Menarguez Lopez, Stella Tamana, Nuria Torquet Luna, Roberta Trapanese, Eduard Van Beers, Sigrid Van der Veen, Maria Del Mar Mañú Pereira
Journal: Blood
Blood (2025) 146 (Supplement 1): 4443.
https://doi.org/10.1182/blood-2025-4443
Published: 2025
Journal Articles

Patient-driven insights in sickle cell disease: Results from a global survey informing public health strategies

Free
Mariangela Pellegrini, Baba Inusa, Raffaella Colombatti, Issom David-Zacharie, Mariane de Montalembert, Piel Fréderic B., Béatrice Gulbis, Smith Lan-Lan, Maria Del Mar Mañú Pereira
Journal: Blood
Blood (2025) 146 (Supplement 1): 4441.
https://doi.org/10.1182/blood-2025-4441
Published: 2025
Journal Articles

Sickle cell disease in europe: A cross-border real-world data analysis from the radeep registry

Free
Anna Collado Gimbert, Sara Reidel, Raffaella Colombatti, Eduard Van Beers, Paola Bianchi, Stella Tamana, Angelo Loris Brunetta, Dore Peereboom, Giovanna Russo, Daniela Cuzzubbo, Elena Cela, José Manuel Marco Sánchez, Sarah Wambacq, Dedeken Laurence, Mariane de Montalembert, Karin Fijnvandraat, Bart Biemond, Frederic Galacteros, Pablo Bartolucci, Andreas Glenthoej, Antonis Kattamis, Ilona Binenbaum, María Pilar Nicolás, Iñigo de Miguel Beriain, Alexis Rodriguez Gallego, Angela Menarguez Lopez, Maximo Tartaglia, Nuria Torquet Luna, Roberta Trapanese, Betzabel Cajiao Garcia, Sandra Manceau, Kian Haseli, Efthymia Panteli, Elisabetta Mezzalira, Vincent De Pierrefeu, Petros Kountouris, Béatrice Gulbis, Maria Del Mar Mañú Pereira
Journal: Blood
Blood (2025) 146 (Supplement 1): 179.
https://doi.org/10.1182/blood-2025-179
Published: 2025
Journal Articles

Implementing patient-centered PROMs in sickle cell disease care: A european consensus approach

Free
Anna Collado Gimbert, Betzabel Cajiao Garcia, Raffaella Colombatti, Mariane de Montalembert, Elisabetta Mezzalira, Eduard Van Beers, Maria Del Mar Mañú Pereira
Journal: Blood
Blood (2025) 146 (Supplement 1): 2666.
https://doi.org/10.1182/blood-2025-2666
Published: 2025
Journal Articles

Oxygen Gradient Ektacytometry Is Associated with Markers of Hemolysis and Inflammation in a Large Sickle Cell Disease Cohort within the GenoMed4ALL Project

Free
Amira Idrizovic, Marissa J.M. Traets, Anna Collado Gimbert, Sara Reidel, Sigrid van der Veen, Anne-Laure Pham Hung D'Alexandry D'Orengiani, Mirco D'Agnolo, Emmanuel Adu, Mickael MARIN, Emmanuelle Bourdelier, Elisabetta Mezzalira, Betzabel Cajiao Garcia, Santiago Zazo, Tiziana Sanavia, Cesare Rollo, David Beneitez, Bart J. Biemond, Erfan Nur, Karin Fijnvandraat, Saskia EM Schols, Anita W. Rijneveld, Marjon H. Cnossen, Aida Kidane, Nicolas Hebert, Maria Paola Boaro, Slimane Allali, Caroline Le van kim, Anna Ruiz Llobet, Béatrice Gulbis, Federico Alvarez, Piero Fariselli, Petros Kountouris, Raffaella Colombatti, Pablo Bartolucci, Mariane De Montalembert, Richard van Wijk, Eduard J. Van Beers, Maria del Mar Mañú-Pereira, Minke A.E. Rab
Journal: Blood
Blood (2024) 144 (Supplement 1): 290.
https://doi.org/10.1182/blood-2024-200639
Published: 2024
Journal Articles

uRADAR: European Patients Referral Frame to Improve Access to New Drugs and Therapies in Ultra-Rare Anemia Disorders and Severe Hereditary Spherocytosis

Free
Maria A. Rodríguez Sánchez, Anna Collado Gimbert, Sara Reidel, Patricia Aguilar-Martinez, Celeste Bento, Elena Cela, Laurence Dedeken, Emma Drasar, Frederic Galacteros, Andreas Glenthoej, Monika Horvathova, Pavla Koralkova, Andreas E. Kulozik, Joachim B. Kunz, Marta Morado-Arias, Ana Ortuno Cabrero, Dagmar Pospíšilová, Minke A.E. Rab, Noemi Roy, Eduard J. Van Beers, Richard van Wijk, Sarah Wambacq, Claire Diot, Victoria Gutiérrez Valle, Raquel Mosull del Campo, Stella Tamana, Raffaella Colombatti, Petros Kountouris, Béatrice Gulbis, Paola Bianchi, Maria del Mar Mañú-Pereira
Journal: Blood
Blood (2024) 144 (Supplement 1): 794.
https://doi.org/10.1182/blood-2024-201501
Published: 2024
Journal Articles

Data Driven Research through the European RADeep Registry and the Use of Artificial Intelligence Towards Personalized Medicine in Sickle Cell Disease

Free
Anna Collado Gimbert, Sara Reidel, Patricia Alonso de Apellániz, Federico Alvarez, Borja Arroyo Galende, David Beneitez, Bart J. Biemond, Maria Paola Boaro, Betzabel Cajiao Garcia, Gastone Castellani, Elena Cela, Marjon H. Cnossen, Piero Fariselli, Karin Fijnvandraat, Béatrice Gulbis, Amira Idrizovic, Petros Kountouris, Vincent Malcor Deydier De Pierrefeu, Sandra Manceau, Elisabetta Mezzalira, Erfan Nur, Kalia Orphanou, Juan Parras, Salvador Payán-Pernía, Anne-Laure Pham Hung D'Alexandry D'Orengiani, Minke A.E. Rab, Giulia Reggiani, Anita W. Rijneveld, Cesare Rollo, Anna Ruiz Llobet, Tiziana Sanavia, Saskia EM Schols, Stella Tamana, Marissa J.M. Traets, Silvia Uribe, Sigrid van der Veen, Santiago Zazo, Pablo Bartolucci, Mariane De Montalembert, Raffaella Colombatti, Eduard J. Van Beers, Maria del Mar Mañú-Pereira
Journal: Blood
Blood (2024) 144 (Supplement 1): 1138.
https://doi.org/10.1182/blood-2024-203331
Published: 2024
Journal Articles

An Artificial Intelligence-Based Federated Learning Platform to Boost Precision Medicine in Rare Hematological Diseases: An Initiative By GenoMed4all and Synthema Consortia

Free
Gianluca Asti, Saverio D'Amico, Luciana Carota, Davide Piscia, Francesco Casadei, Nono Saha Cyrille Merleau, Patricia Alonso de Apellániz, Anne Sophie Kubasch, Silke Gloaguen, Nicole Modler, Catalina Gonzalez Martin, Cesare Rollo, Juan Parras, Mattia Delleani, Elena Zazzetti, Elisabetta Sauta, Nico Curti, Nicolas Riccardo Derus, Gianluca Carlini, Daniele Dall'Olio, Claudia Sala, Lorenzo Dall'Olio, Luca Lanino, Giulia Maggioni, Alessia Campagna, Marilena Bicchieri, Arturo Bonometti, Cesare Lancellotti, Daoud Rahal, Luca Di Tommaso, Tiziana Sanavia, Piero Fariselli, Matteo Zampini, Matteo Brindisi, Victor Savevski, Uwe Platzbecker, Maria Diez-Campelo, Lin Pierre Zhao, Pierre Fenaux, Torsten Haferlach, Vincent Planat, Raffaella Colombatti, Maria del Mar Mañú-Pereira, Anders Krogh, Silvia Uribe, Santiago Zazo, Enrico Giampieri, Gastone Castellani, Matteo Giovanni Della Porta, Federico Alvarez
Journal: Blood
Blood (2024) 144 (Supplement 1): 4989.
https://doi.org/10.1182/blood-2024-205541
Published: 2024
Journal Articles

Impact-AML: A European Master Framework for Cohort Studies and Pragmatic Clinical Trials in Relapse or Refractory Acute Myeloid Leukemia

Free
Giovanni Marconi, Petros Kountouris, Jiri Mayer, Lars Bullinger, Dirk Reinhardt, Pau Montesinos, Pietro Merli, Marco Vignetti, Jos Dumortier, Jesús María Hernández-Rivas, Michael Heuser, Rolandas Gerbutavicius, Antonio Francesco Maturo, Gianni D'Errico, Samantha Nier, Chiara Zingaretti, Irene Azzali, Federica Campacci, Maria Del Mar Mañú-Pereira, Franco Locatelli, Rüdiger Hehlmann, Dietger W. Niederwieser, Giovanni Martinelli
Journal: Blood
Blood (2023) 142 (Supplement 1): 1533.
https://doi.org/10.1182/blood-2023-184745
Published: 2023
Journal Articles

The International Hemoglobinopathy Research Network (INHERENT): An International Initiative to Study the Role of Genetic Modifiers in Hemoglobinopathies

Free
Petros Kountouris, Coralea Stephanou, Natasha M. Archer, Fedele Bonifazi, Viviana Giannuzzi, Kevin H.M. Kuo, Aurelio Maggio, Julie Makani, Maria Del Mar Mañú Pereira, Kyriaki Michailidou, Siana Watoky Nkya, Obiageli E Nnodu, Sara Trompeter, Leon Tshilolo, Ambroise Wonkam, Bin Alwi Zilfalil, Baba PD Inusa, Marina Kleanthous
Journal: Blood
Blood (2021) 138 (Supplement 1): 948.
https://doi.org/10.1182/blood-2021-146078
Published: 2021
Journal Articles

ERN-EuroBloodNet European Registry of Patients Affected by Red Blood Cell Disorders and COVID-19

Free
Pablo Velasco, Filomena Longo, Andrea Piolatto, Eduardo J. Bardón-Cancho, Beatriz Ponce-Salas, Pagona Flevari, Ersi Voskaridou, Bart J. Biemond, Erfan Nur, Polyxeni Delaporta, Tatiana Besse-Hammer, Anna Ruiz-Llobet, Simona Raso, Anna Spasiano, Maria Elena Guerzoni, David Beneitez-Pastor, Laurence Dedeken, Alessia Pepe, Rosamaria Rosso, Joachim B. Kunz, Mariane de Montalembert, Saveria Campisi, Andreas Glenthøj, Paula Gonzalez Urdiales, Fleur Samantha Benghiat, Marie-Agnès Azerad, Christopher J. Saunders, Teresa Ferreira Faria, Tommaso Casini, Sabrina Bagnato, Ann Van de Velde, Veerle Labarque, Elisa Bertoni, An Van Damme, Michael D. Diamantidis, Roberta Russo, Eftichia Stiakaki, Alessandra Quota, Soteroula Christou, Maria Jose Teles, Ioannis Lafiatis, Jean-Louis Kerkhoffs, María Argüello Marina, Mikael Lorite, Alexis Rodriguez, Achille Iolascon, Ali T. Taher, Raffaella Colombatti, Noemi Roy, Maria Del Mar Mañú Pereira
Journal: Blood
Blood (2021) 138 (Supplement 1): 4058.
https://doi.org/10.1182/blood-2021-147236
Published: 2021
Journal Articles

Limited Access to Transcranial Doppler Screening and Stroke Prevention for Children with Sickle Cell Disease in Europe: Results of a Multinational Eurobloodnet Survey

Free
Daniela Cuzzubbo, Victoria Gutierrez-Valle, Maddalena Casale, Vincenzo Voi, Corrina McMahon, Maria Del Mar Mañú Pereira, Mariane de Montalembert, Baba PD Inusa, Raffaella Colombatti
Journal: Blood
Blood (2021) 138 (Supplement 1): 915.
https://doi.org/10.1182/blood-2021-147298
Published: 2021
Journal Articles

Towards an External Quality Assessment for Next Generation Sequencing in the Diagnosis of Rare Inherited Anaemias

Free
Noemi Roy, MBBCH, MD, Melanie Proven, PhD, Irene Roberts, MD, Hannah Tamary, MD, Dorine W. Swinkels, MD PhD, Aguilar-Martinez Patricia, MD PhD, Paola Bianchi, BSc, PhD, Raffaella Colombatti, MD PhD, Roberta Russo, Barnaby Clark, Mayka Sanchez, MD, Rafael Andres DEL Orbe Barreto, Elisa Fermo, PhD, Vip Viprakasit, MD DPhil, Jiraporn Korchuenjit, BSc, Tabita Magalhães Maia, MD, Frances Smith, BSc, Maria del Mar Manu, BSc, PhD, Lydie Da Costa, Antonio Marzollo, Anabelen Hozdelarastrollo, Beatriz Arrizabalaga, MD PhD, Delasalle Barbara, Achille Iolascon, MD PhD
Journal: Blood
Blood (2018) 132 (Supplement 1): 4936.
https://doi.org/10.1182/blood-2018-99-111609
Published: 2018