EBMT-Annual-Report-2019.Pdf
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TABLE OF CONTENTS Foreword by the EBMT President 2 About the European Society for Blood and Marrow Transplantation 3 EBMT structure 4 Staff organisational chart 5 EBMT membership 6 Legal and regulatory activities 8 SCIENCE The scientific activity reports 11 Severe Aplastic Anaemia Working Party (SAAWP) 12 Autoimmune Diseases Working Party (ADWP) 14 Acute Leukaemia Working Party (ALWP) 16 Cellular Therapy & Immunobiology Working Party (CTIWP) 18 Infectious Diseases Working Party (IDWP) 20 Inborn Errors Working Party (IEWP) 22 Lymphoma Working Party (LWP) 24 Paediatric Diseases Working Party (PDWP) 26 EBMT Chronic Malignancies Working Party (CMWP) 28 Transplant Complications Working Party (TCWP) 30 EBMT Publications 2019 32 EBMT Transplant Activity Survey 2018 38 The EBMT Registry 41 EDUCATION EBMT 45th Annual Meeting 45 Awards 48 Educational events 2019 50 New EBMT e-learning platform 51 PATIENT CARE EBMT Nurses Group Activity Report 53 Highlights of the JACIE’s activities 56 Financial Report and Highlights 2019 60 EBMT’s partners 64 Foreword by the EBMT President Nicolaus Kröger EBMT President As president of our society I am very proud and honored to Patient, Family and Donor Day into the congress as well as present the EBMT activity report summarising the amazing the launch of the 1st Transplant Coordinator Day was very well achievements of our society in 2019. received and was based on our strategy to provide patients with a voice in a patient-focused society as well as including In our annual report you can follow the scientific and all health care providers involved in stem cell transplantation educational activities of our working parties and nurses’ and cellular therapies. group as well as the different committees over the last twelve months, as evidenced by many achievements including an Early in 2019, the EBMT registry received a regulatory increasing number of publications in high rank peer reviewed qualification from the European Medicine Agency (EMA) on journals and cutting-edge educational events. Together these the use of its patient registry to support novel CAR-T cell activities reflect once again this year, EBMT’s pioneering therapies which support our efforts to register all CAR-T cell role in promoting and advancing the field of stem cell and other immune effector cell treatments in our registry. transplantation and cellular therapies. pg. 2 pg. In order to collect all CAR-T cell procedures in Europe in By adhering to our EBMT educational strategy, in 2019 we our registry, we contacted national study groups, medical increased our educational activities and prioritised our efforts societies, health authorities and pharmaceutical industry to and human resources into educational events. work on a governance structure, which will provide access to CAR-T cell results to all stakeholders. In addition to the numerous educational events of the working parties in 2019, the newly established mid-size events such In addition, in January 2020, EBMT announced a new as the well-attended and successful EBMT GvHD summit collaboration with Novartis Pharmaceuticals to study in Warsaw and the international transplant course (ITC) in the long-term outcomes of patients treated with CAR-T Barcelona reflect this strategy. In January we performed therapies. together with the European Hematology Association (EHA) an extremely successful and important 1st European CAR-T Beside these achievements, we are still facing with the Cell Meeting in Paris, which with more than 600 attendees underestimated workload of data migration from ProMISe to was “sold out” after only a few weeks after its announcement. the new registry system MACRO and for this reason we were The 2nd European CAR-T Cell Meeting in Sitges in early not able to launch the new system in 2019. Nevertheless, I 2020, with more than 1,000 registrations, received similar am very optimistic that we will solve this issue very soon. attractiveness, demonstrating also our leading educational As you can see and read on the following pages, 2019 has role in cell and gene therapy. been a year of remarkable and amazing progress in many Thanks to the support of DKMS we could launch the aspects and fields and I would like to express my deep e-learning platform and in 2020 several webinars and online gratitude to all who contribute to the fabulous activities of our learning modules will be released to improve knowledge society in 2019 including the centers of EBMT in Europe and of all health care providers working in the field of stem cell around the world, who report patient outcome data to our transplantation and cellular therapies. The new EBMT registry. Handbook was launched in 2019 and has become a new Please enjoy reading the annual report and continue your standard in the field of stem cell transplantation where it commitment to EBMT in 2020. Please give us also any can be used as an optimal preparation process in order feedback and try to attend the different working party to pass the first EBMT exam, which will be launched at business meetings or educational events and contribute EBMT’s Annual Meeting in Madrid and will provide a personal actively as part of our society and by moving the field forward qualification for physicians working in the field of stem cell in order to save more life of our patients. transplantation and cellular therapy. The 45th Annual Meeting of EBMT in Frankfurt was one of most successful and record-breaking EBMT congresses Nicolaus Kröger with more than 5,600 attendees from 91 countries and up-to-date and cutting-edge presentations about stem cell transplantation and cellular therapies. The inclusion of the The EBMT is a not-for profit medical and About scientific organisation established in 1974. It is dedicated to fighting life-threatening blood cancers and diseases and improving patients’ the European lives. EBMT members–more than 5,000 physicians, Society for nurses, scientists and other healthcare professionals–participate in a unique collaborative network of peers involved in Blood and haematopoietic stem cell transplantation (HSCT) and cellular therapy research. Membership encompasses more than 550 Marrow centres from over 70 countries, that perform or are involved in HSCT. Transplantation The EBMT holds a central role in performing co-operative studies and disseminating state- of-the-art knowledge: the aim is to increase survival rates and enhance the quality of life of patients with life-threatening blood cancers and EBMT diseases. THE EBMT IS BUILT ON 3 PILLARS SCIENCE EDUCATION PATIENT CARE PATIENT EBMT STRUCTURE 14. Infectious Diseases 1 2/9 3 BOARD Jan Styczynski University Hospital, Collegium Medicum UMK 1 1. Executive Committee, President Bydgoszcz, Poland Nicolaus Kröger University Hospital Eppendorf 15. Inborn Errors Hamburg, Germany Arjan Lankester Leiden University Hospital 2. Executive Committee, Secretary Leiden, The Netherlands Rafael Duarte Hospital Universitario Puerta de Hierro 16. Lymphoma 4/12 5/13 6/11/22 Madrid, Spain Silvia Montoto St. Bartholomew’s and The Royal London 3. Executive Committee, Treasurer NHS Trust Harry Dolstra London, UK Radboud University Medical Centre Nijmegen, Netherlands 17. Paediatric Diseases Selim Corbacioglu 4. Scientific Council Chair with Children`s Hospital Regensburg Research and Sciences Portofolio Regensburg, Germany Mohamad Mohty Hospital Saint Antoine 18. Chronic Malignancies 7/19 8 10 Paris, France Ibrahim Yakoub-Agha Lille Hospital 5. Scientific Council Vice-Chair with Lille, France Research and Sciences Portofolio Christian Chabannon 19. Transplant Complications Institut Paoli Calmettes Grzegorz W. Basak Marseille, France Medical University of Warsaw Warsaw, Poland 6. Scientific Council Representative with the Registry Portofolio 14 15 John Snowden 16 Sheffield Teaching Hospitals NHS Trust COMMITTEES pg. 4 pg. Sheffield, UK 7. Scientific Council Representative with 20. Nuclear Accident the Education Portofolio Ray Powles Grzegorz W. Basak Cancer Center London Medical University of Warsaw London, UK Warsaw, Poland 21. Statistical 8. Nurse Group President Simona Iacobelli 17 18 20 John Murray Hospital Saint Antoine Christie NHS Trust Hospital Paris, France Manchester, UK 22. JACIE 9. EBMT 2020 Annual Meeting John Snowden President Sheffield Teaching Hospitals NHS Trust Rafael Duarte Sheffield, UK Hospital Universitario Puerta de Hierro Madrid, Spain 23. Donor Outcomes Nina Worel 21 23 24 Medical University of Vienna Vienna, Austria SCIENTIFIC COUNCIL - 24. Registry Per Ljungman WORKING PARTIES Karolinska University Hospital Stockholm, Sweden 10. Severe Aplastic Anaemia 25. Global Régis Peffault de Latour Norbert-Claude Gorin Hospital Saint Louis Hospital Saint Antoine 25 26 27 Paris, France Paris, France 11. Autoimmune Diseases 26. Legal & Regulatory Affairs (LRAC) John Snowden Jürgen Kuball Sheffield Teaching Hospitals NHS Trust UMC Utrecht Utrecht, Sheffield, UK Netherlands 12. Acute Leukaemia 27. Pharmacist Mohamad Mohty Tiene Bauters Hospital Saint Antoine Paediatric Clinic Prinses Elisabeth 28 Paris, France Gent, Belgium 13. Cellular Therapy & Immunobiology 28. Patient, Family and Donor Christian Chabannon Bregje Verhoeven Institut Paoli Calmettes Hematon patient organisation Marseille, France Utrecht, The Netherlands STAFF ORGANISATIONAL CHART 1. Manuela Badoglio (ADWP SC) 7. Philippe Yakonowsky (TCWP SC) 2. Hervé Finel (LWP SC) Emmanuelle Polge 3. Pascale Ambron (ALWP SC) Jessica Lemaitre (VOD Registry) (Data Office Manager Paris) 4. Arnaud Dalissier (PDWP SC) 5. Irma Khvedelidze (ALWP & LWP SC) Monica Jana (DM & assist.) 6. Mohamed Houhou (ALWP SC) William Boreland (Jr DM Pharma) 1. Paul Bosman (Senior DM & SC) 1. Anja Henseler (DM) 2. Linda Koster (CMWP SC) 2. Tirlain Sirait (CMWP Jr DM) Marco Bressers 3. Nina Knelange (IDWP SC) 3. Nienke Zinger (CMWP Jr DM) (Data Office Manager Leiden) 4. Sheree Hazelaar (IEWP SC) 4. Lotus Wendel (IDWP Jr DM) 5. Anne Lippinkhof (WPN Jr SC) 5. Annelot van Ameronger (pharma Jr DM) 6.- Jorinde Hoogenboom (CTIWPJr SC) 6. Brian Piepenbroek (SAAWP Jr DM) Marianne Mol Clinical Research 1. Myriam Labopin (Senior Paris) 1. Dirk-Jan Eikema (CM & SAAWP Leiden) Director 2. Ariane Boumendil (Senior Paris) 2. Katya Mauff (Pharma-CM & CTIWP 3.