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RADeep Network @RADeep_network

RADeep (Rare Anaemia Disorders European Epidemiological Platform) is a GDPR-compliant patient registry launched in 2017.

Joined May 2025
  • Tweets 67
  • Following 84
  • Followers 20
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RADeep Network@RADeep_network
5 Jun 2025
🩸🌍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.
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🎯​Real-world evidence is only as strong as the data behind it. Last week, RADeep brought together data entry teams from across Europe in Barcelona ,because building a reliable registry means investing in the people who make it possible. radeepnetwork.eu/
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🌍 We were pleased to welcome 14 participants from Belgium, Denmark, France, Greece, Italy, the Netherlands, Norway, Portugal, and Spain. The session covered two critical areas: genotype data extraction and accurate recording of acute events
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Replying to @ERNEuroBloodNet @EU_Commission @EU_Health @vallhebron
A dedicated session led by Dr. María del Mar Mañú Pereira, Head of the Rare Anemia Disorders Laboratory at @VHIR_ ) and Scientific Coordinator of ERN-EuroBloodNet, focused specifically on genotype data extraction and correct data entry practices.
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🚀 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
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📢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
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📣 #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
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📣​#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
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🤝​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.
Vall d'Hebron
@vallhebron
17 Dec 2025
2025 ha estat un any molt actiu per a #RADeep, el registre europeu d'anèmies minoritàries liderat per #VallHebron. 📃 Vam acollir la reunió del Comitè d'Accés a Dades 🗣️ S'han presentat cinc treballs a la Reunió Anual de @ASH_hematology  @ERNEuroBloodNet #RecercaPediàtricaVH Més: vallhebron.social/radeep-202…
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RADeep Network retweeted
ERN EuroBloodNet@ERNEuroBloodNet
15 Dec 2025
⏰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…
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RADeep Network retweeted
CCBD_VH Research Group@CCBD_VHResearch
10 Dec 2025
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.
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📊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
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#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).
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📣​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/… #RADeep #hematology
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🌍 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.
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#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
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🩸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/
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🌍Her presentation highlighted how clinical evidence, patient profiles and preferences, and real-world data can guide these decisions across different ages and geographical settings.
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🎯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’
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💻#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/… #ASH25 #RADeep #Hematology #Research #Innovation
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🎤​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/… #ASH25 #RADeep #Hematology #Research #Innovation #Healthcare
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