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STEM CELL DONOR REGISTRIES

STEM CELL DONOR REGISTRIES. A. Vanhonsebrouck, MD E . Baudoux, MD.

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STEM CELL DONOR REGISTRIES

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  1. STEM CELL DONOR REGISTRIES A. Vanhonsebrouck, MD E. Baudoux, MD ARMB-KAGB

  2. Hematopoietic stem cell transplantation (HSCT) has become an accepted therapy for many congenital or acquired disorders of the hematopoietic system and has seen major changes in indications and use of transplant techniques over the years. EBMT Annual report, 2010 ARMB-KAGB

  3. Principle BoneMarrow Blood WBC RBC Platelets ARMB-KAGB

  4. Stem cell sources PBSC BM CB ARMB-KAGB

  5. BriefHistory ARMB-KAGB

  6. HumanLeucocyte Antigens Father Mother Children ARMB-KAGB

  7. Donors –CBU worldwide BMDW:19 Million BMDW:0,5 Million BMDW : Bone Marrow Donors Worldwide WMDA : World Marrow Donor Association ARMB-KAGB

  8. MDPB-REGISTRY(Marrow Donor Program Belgium) • HISTORY : 1989 Belgian Stem Cell Donor Registry • ADDRESS : MOTSTRAAT 40, 2800 MECHELEN • COMPOSITION MDPB-REGISTRY TASK: FINANCIAL – ADMINISTRATIVE MANAGEMENT STAFF: DIRECTOR: A. VANHONSEBROUCK Adjunct Director + 2 Search coordinators MDPB-VZW/ASBL TASK: MEDICAL AND SCIENTIFIC ADVISE PRESIDENT : E. BAUDOUX Representatives of Transplant Center (TC), Donor Center (DC), Cord Blood Bank (CBB) and Collection Center (CC). ARMB-KAGB

  9. MDPB-REGISTRYGoals • To provide stem cells from an HLA identical unrelated donor to national/international patients • Stem cell transplantation for patients with hematological diseases (malignant and non-malignant) • Related : familial transplantation: 1/4 perfect match • Unrelated : 1/50.000 perfect match • National Collaboration • 9 donor centers/ 10 transplant centers/ 5 cord blood banks/ 5 collection centers • Part of international collaboration • BMDW : 19 million donors – 500.000 CBU • Cooperation with 65 stem cell donor Registries – 44 Cord Blood Banks ARMB-KAGB

  10. MDPB-REGISTRY Internet Internet 9 Transplant centers (national patients) 7 donorcenters >60 000 Donors 2011 MDP-B Registry (Syrenad) Internet 5 Cord bloodbanks >16 000 CBUs EMDIS Searching for national donors Searching for International donors ARMB-KAGB

  11. MDPB-R Donor inventory N = 60346 Donors ARMB-KAGB

  12. MDPB-RCordbloodinventory N=16088 CBU ARMB-KAGB

  13. MDPB-RSearch-Transplant activity BELGIAN PATIENTS ARMB-KAGB

  14. MDPB-RTransplant activity ARMB-KAGB

  15. MDPB-RTransplant activity ARMB-KAGB

  16. MDPB-R SWOT analysis ARMB-KAGB

  17. MDPB-R PROJECTS 1.DonorRecruitment Action Plan SITUATION before 2008 - number of donors : 45.000 - donor data base is aging (drop-off >60 y) - data HLA typing is poor/ median age: 45-50 y CONTRACT with RIZIV-INAMI - 5 years (2008-2013) : 10.000 new donors - HLA typing better quality : molecular methods (A,B,C,DR) - Recruitment campaigns donor centers and transfusion centers ACTUAL RESULTS -SUCCESS ! Total amount : 60346 new donors 12.627 CHALLENGE : CONTINUOUS RECRUITMENT AFTER 2013 ARMB-KAGB

  18. Donor Recruitment action Plan ARMB-KAGB

  19. MDPP-R PROJECTS1.Donor RecruitmentAction Plan RKVL : ANT+BTO SJB : St Jan Bruges VUB : UZ Brussel GOD : Mont Godinne SFS : Service du Sang KUL : UZ Leuven ARMB-KAGB

  20. MDPB-R PROJECTS2. CANCER PLAN - CANCERPLAN launched in 2008 – actions were defined • STRUCTURAL SUPPORT OF TISSUE BANKS FOR CELL THERAPY and THERAPY with HSC and CB by financing (personnell – storage – general costs) 13 hospitals receive funding • MEETING MDPB-R and delegates of CANCER CENTRE 2011 ARMB-KAGB

  21. MDPB-R PROJECTS3. IT APPLICATION -January 2008 : Software SYRENAD (FGM - France) webbased application for exchange of information between centers (Donor Centre,TC, CBB, Collection Centers) and Registries -EMDIS (European Marrow Donor Information System) (15 countries) electronic communication between MDPB/intern.Registries encrypted secured email based communication system -PROMETHEUS : FUTURE SOFTWARE APPLICATION already used in more than 10 registries EMDIS : connection with 27 countries ARMB-KAGB

  22. IT application – Syrenad -Prometheus Global search: 28 Emdis connections Finland Canada Denmark Czech (Plzen) BBMR Slovakia US NMDP Poland Cyprus US Caitlin Israel EUROPE :Germany,Switzerland,Spain, France,Italy, Netherlands,UK-Wales, Austria, Sweden, Norway, Czech R. Taiwan South Africa Australia SYRENAD: 15 PROMETHEUS : + 12 EMDIS connections ARMB-KAGB

  23. MDPB-R PROJECTS4. MEDIUM SIZED REGISTRIES -Medium Sized Registries : 20.000-100.000 donors -countries : Switzerland, Belgium, Sweden, Spain, Cyprus, Norway, Finland, Czech Republic, Ireland, Wales, Austria, Netherlands, Denmark -First meeting sept 28, 2011 -Purpose : maintain and strengthen viability of « medium sized » registries by increasing efficiency and diversity in a situation with enhanced needs and limited resources ARMB-KAGB

  24. THANK YOU ! MORE INFO Annual report 2011 willbeavailableonthe websitewww.infodonor.be end of June 2012 ARMB-KAGB

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