4nd Patient and Family Day

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4nd Patient and Family Day EBMT Slide template Barcelona 7 February 2008 EBMT 2010 Vienna, Austria ; www.ebmt.org

History of Stem Cell Transplantation Appelbaum et al, NEJM 2006

What is EBMT? Scientific, non-profit society and foundation with the mission to excel in stem cell transplantation by: Promoting basic and clinical research Registration Education Standardization Quality control Accreditation Informing patients and families

Where is EBMT?

EBMT Structure EBMT Board Executive committee Working Parties Registries Patients & families Nurses Group Committees JACIE Acute Leukaemia National EBMT Working Parties Aplastic Anaemia Autoimmune Diseases Survey Board Education Chronic Leukaemias Immunobiology Infectious Diseases Late Effects Lymphoma Paediatric Diseases Solid Tumours Austria Czech Rep France Germany Italy -Allo Italy - Auto The Netherlands Registry office Paris Total Body Irradiation Cord Blood Haemoglobinopathy Research committee Editorial Board Nuclear Accident Quality Assessment of HSC Grafts Stem Cell Research Prospective Clinical Trials Statistical Outreach Switzerland Turkey UK - BMT UK - paediatric

EBMT Structure EBMT Board Executive committee Working Parties Registries Patients & families Nurses Group Committees JACIE Acute Leukaemia National EBMT Working Parties Aplastic Anaemia Survey Autoimmune Diseases Board Education Chronic Leukaemias Austria Research committee Nuclear Accident Immunobiology Czech Rep Registry office Paris Editorial Board Quality Assessment of HSC Grafts France Stem Cell Research Infectious Diseases Total Body Irradiation Germany Late Effects Prospective Clinical Trials Italy -Allo Lymphoma Cord Blood Statistical Paediatric Diseases Italy - Auto Haemoglobinopathy Solid Tumours The Netherlands Outreach Switzerland Turkey UK - BMT UK - paediatric

EBMT Structure EBMT Board Executive committee Working Parties Registries Patients & families Nurses Group Committees JACIE Acute Leukaemia National EBMT Working Parties Aplastic Anaemia Survey Autoimmune Diseases Board Education Chronic Leukaemias Austria Research committee Nuclear Accident Immunobiology Czech Rep Registry office Paris Editorial Board Quality Assessment of HSC Grafts France Stem Cell Research Infectious Diseases Total Body Irradiation Germany Late Effects Prospective Clinical Trials Italy -Allo Lymphoma Cord Blood Statistical Paediatric Diseases Italy - Auto Haemoglobinopathy Solid Tumours The Netherlands Outreach Switzerland Turkey UK - BMT UK - paediatric

EBMT Structure EBMT Board Executive committee Working Parties Registries Patients & families Nurses Group Committees JACIE Acute Leukaemia National EBMT Working Parties Aplastic Anaemia Survey Autoimmune Diseases Board Education Chronic Leukaemias Austria Research committee Nuclear Accident Immunobiology Czech Rep Registry office Paris Editorial Board Quality Assessment of HSC Grafts France Stem Cell Research Infectious Diseases Total Body Irradiation Germany Late Effects Prospective Clinical Trials Italy -Allo Lymphoma Cord Blood Statistical Paediatric Diseases Italy - Auto Haemoglobinopathy Solid Tumours The Netherlands Outreach Switzerland Turkey UK - BMT UK - paediatric

EBMT Structure EBMT Board Executive committee Working Parties Registries Patients & families Nurses Group Committees JACIE Acute Leukaemia National EBMT Working Parties Aplastic Anaemia Survey Autoimmune Diseases Board Education Chronic Leukaemias Austria Research committee Nuclear Accident Immunobiology Czech Rep Registry office Paris Editorial Board Quality Assessment of HSC Grafts France Stem Cell Research Infectious Diseases Total Body Irradiation Germany Late Effects Prospective Clinical Trials Italy -Allo Lymphoma Cord Blood Statistical Paediatric Diseases Italy - Auto Haemoglobinopathy Solid Tumours The Netherlands Outreach Switzerland Turkey UK - BMT UK - paediatric

EBMT Structure EBMT Board Executive committee Working Parties Registries Patients & families Nurses Group Committees JACIE Acute Leukaemia National EBMT Working Parties Aplastic Anaemia Survey Autoimmune Diseases Board Education Chronic Leukaemias Austria Research committee Nuclear Accident Immunobiology Czech Rep Registry office Paris Editorial Board Quality Assessment of HSC Grafts France Stem Cell Research Infectious Diseases Total Body Irradiation Germany Late Effects Prospective Clinical Trials Italy -Allo Lymphoma Cord Blood Statistical Paediatric Diseases Italy - Auto Haemoglobinopathy Solid Tumours The Netherlands Outreach Switzerland Turkey UK - BMT UK - paediatric

EBMT Structure EBMT Board Executive committee Working Parties Registries Patients & families Nurses Group Committees JACIE Acute Leukaemia National EBMT Working Parties Aplastic Anaemia Survey Autoimmune Diseases Board Education Chronic Leukaemias Austria Research committee Nuclear Accident Immunobiology Czech Rep Registry office Paris Editorial Board Quality Assessment of HSC Grafts France Stem Cell Research Infectious Diseases Total Body Irradiation Germany Late Effects Prospective Clinical Trials Italy -Allo Lymphoma Cord Blood Statistical Paediatric Diseases Italy - Auto Haemoglobinopathy Solid Tumours The Netherlands Outreach Switzerland Turkey UK - BMT UK - paediatric

Achievements of EBMT > 650 articles published in leading scientific journals > 10 prospective clinical studies running > 100 retrospective studies running Consultant of the European Union Consultant of the EMEA

Latest developments Increasing HCT activities in Europe (>30.000 / year) Age limits disappeared (HCT > 75 years) Results of unrelated HCT increased (= related) Alternative donors: unrelated cord blood haploidentical Successful treatment of relapse after HCT

Evolution of RIC allogeneic HSCT in Europe 1990-2008 H S C T 14000 12000 10000 8000 6000 4000 2000 Allo total HSCT RIC HSCT 0 90 92 94 96 98 00 02 04 06 08 2008: final data

EBMT Activity Survey on HSCT 1990-2008 changes in CML 1200 CML cp allo H S C T 900 600 CML non 1st cp allo CML cp auto 300 CML non 1st cp auto 0 90 92 94 96 98 00 02 04 06 08 2008: final data

EBMT Activity Survey on HSCT 1990 2008 Cord blood HSCT 800 600 Cord blood H S C T 400 200 0 97 98 99 00 01 02 03 04 05 06 07 08 2008: final data

Autologous HCT - rate increased H S C T 14000 12000 10000 8000 6000 4000 2000 Lymphoproliferative disorders Solid tumors Leukemias Non malignant 0 90 92 94 96 98 00 02 04 06 08 2008: final data

EBMT Activity Survey on HSCT 1990-2008 changes in MDS/MPS H S C T 1600 1400 1200 1000 800 600 400 200 MDS/MPS allo MDS/MPS auto 0 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 2008: final data

EBMT Activity Survey on HSCT 1990-2008 changes in PCD 8000 H S C T 6000 4000 PCD auto PCD allo 2000 0 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 2008: final data

Global Activity Survey 2008 (estimate) Region Allo Auto Total The Americas 8500 11500 20000 Asia/Western Pacific 4500 3400 7900 Europe 10000 16000 26000 East Med/Africa 900 500 1400 Total 23900 31400 55300 Preliminary information: 10% increase Worldwide Network for Blood and Marrow Transplantation

Future plans Compare HCT with new drugs Treat GvHD better Decrease Relapse rates Consult patient and families Nuclear preparedness

Quality of Life After HCT