RADeep Network

🩸🌍The RADeep Network is now live on social media! 🔎What is #RADeep? Established in 2017, RADeep is the European patient registry platform dedicated to rare anemia disorders (RADs), serving as an umbrella for both new and existing patient registries across Europe.

🚀 Join the RADeep team at @VHIR_ in Barcelona! 🚀 - Data Engineer👉 lnkd.in/d6Mkwg5q - Data Manager👉 lnkd.in/dBsZrTXF Don’t miss the chance to be part of our team! #Hiring #DataEngineer #DataManager #RealWorldEvidence #CareerOpportunity #RADeep #RADs

📢We are looking for a Senior Scientific Coordinator to join the RADeep team! 👉 If you have experience in scientific project coordination and enjoy working in international environments, we would love to hear from you! lnkd.in/eqcphE42 📅 Deadline: 23/02/2026

📣 #Hiring alert! We are looking for a motivated Biostatistician to join our Data Driven Team at @VHIR_ in Barcelona! 🔗 Excited about this role? Apply now and join our team! lnkd.in/enYKUK58

📣​#Hiring alert! We are looking for a dedicated and detail-oriented Study Coordinator to join our team at @VHIR_ Vall d'Hebron Institut de Recerca, Barcelona! 🔗Excited about this role? Apply now and join our team: jobs.vhir.org/jobs/6487424-r… #RADeep #RADs #hematology #coordinator

🤝​It has been a highly active year for #RADeep Network, the European registry for rare anemias coordinated by @VHIR_ , with important contributions presented at the American Society of Hematology Annual Meeting.

⏰Final week to submit your abstract! The submission is still open for the @EHA_Hematology SWG Scientific Meeting on Bleeding and Platelet Disorders, to be held in Florence, Italy, April 9–11, 2026. 📝 Submit your abstract by December 21! eurobloodnet.eu/news/697/eha-s…

Honoured to highlight María del Mar Mañú Pereira, Rare Anemias Lab Lead and ERN-EuroBloodNet Co-Coordinator, for her talk on ethical, data-driven AI in rare diseases at the XXXI National Congress of Health Law in Madrid.

#RADeep is coordinated by Dr @mmanupe , Head of the Rare Anaemia Disorders Laboratory at @VHIR_ Vall d’Hebron Institute of Research (VHIR) and Scientific Coordinator of the @ERNEuroBloodNet (European Reference Network on Rare Hematological Diseases).

📊Anna Collado at #ASH25 poster session “Thalassemia in europe: A cross-border real-world data analysis from the radeep registry” This study presents the results of the first European dataset of thalassemia patients captured in the #RADeep Registry. bit.ly/3XI2vuk

#ASH25 Poster Session was also an excellent opportunity for members of the #RADeep Steering Committee & Data Access Committee to exchange insights and discuss challenges and perceptions regarding care, treatment access, and inclusion in clinical trials for people living with RADs

🌍 This work presents a data validation and quality framework aligned with FAIR principles (Findable, Accessible, Interoperable, Reusable) and the European Medicines Agency recommendations, aimed at building a cross-border European SCD multi-modal real-world dataset.

📣​NEWS from the #ASH25! Sara Reidel is presenting “Data validation and quality framework for building a european multimodal real-world dataset for clinical outcome research in sickle cell disease” at the 67th ASH Annual Meeting. 🔗meetings-api.hematology.org/api/abstract/v… #RADeep #hematology

🎯RADeep’s role as a centralized, high-quality real-world data registry is crucial for identifying and characterizing patient cohorts eligible for specific therapeutic strategies.RADeep supports both clinicians and researchers in assessing the question ‘Who, What, When and Where’

🌍Her presentation highlighted how clinical evidence, patient profiles and preferences, and real-world data can guide these decisions across different ages and geographical settings.

🩸Raffaella Colombatti, pediatric hematologist-oncologist at the Pediatric Hematology Oncology Unit of the Azienda Ospedale Università Padova & member of RADeep Steering Commitee presented “Sickle cell therapies- The Who, What, When and Where” at #ASH25 radeepnetwork.eu

💻#NOW! ​Poster session at #ASH25: “Implementing patient-centered PROMs in sickle cell disease care: A european consensus approach” Presenter: Anna Collado Gimbert (@vallhebron) 🔗Find out more: ​meetings-api.hematology.org/api/abstract/v… #ASH25 #RADeep #Hematology #Research #Innovation

🎤​Anna Collado Gimbert (@vallhebron) presented “Sickle cell disease in europe: A cross-border real-world data analysis from the radeep registry” at #ASH25! ​🔗Find out more: ​meetings-api.hematology.org/api/abstract/v… #ASH25 #RADeep #Hematology #Research #Innovation #Healthcare

📣​The RADeep team is at #ASH25 in Orlando! We’re excited to be part of the 67th @ASHematology Annual Meeting, taking place from December 6-9, 2025, at the Orange County Convention Center in Orlando, Florida. ​​🩸 hematology.org/meetings/annua… #RADeep #Hematology #Research

📍​Dr. María del Mar Mañú Pereira (RADeep Coordinator and Scientific Coordinator of the @ERNEuroBloodNet & #ENROL) presented “Towards ethical AI in Rare Diseases: data quality and clinical validation for real equity” at the XXXI National Congress on Health Law in Madrid, Spain.

RADeep Presentations at #ASH25: ✅meetings-api.hematology.org/api/abstract/v… ✅meetings-api.hematology.org/api/abstract/v… ✅meetings-api.hematology.org/api/abstract/v… ✅meetings-api.hematology.org/api/abstract/v… 🤝 This is a fantastic recognition of the collective work of our network and the growing impact of #RADeep research efforts.

📣We are pleased to announce that RADeep will participate in the 67th #ASH Annual Meeting and Exposition! ✅This year, we will present four key contributions focused on real-world data, outcome research in hemoglobinopathies, and Europe-wide data standardization efforts.