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STEM CELL DONOR REGISTRIES. A. Vanhonsebrouck, MD E . Baudoux, MD.
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STEM CELL DONOR REGISTRIES A. Vanhonsebrouck, MD E. Baudoux, MD ARMB-KAGB
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
Principle BoneMarrow Blood WBC RBC Platelets ARMB-KAGB
Stem cell sources PBSC BM CB ARMB-KAGB
BriefHistory ARMB-KAGB
HumanLeucocyte Antigens Father Mother Children ARMB-KAGB
Donors –CBU worldwide BMDW:19 Million BMDW:0,5 Million BMDW : Bone Marrow Donors Worldwide WMDA : World Marrow Donor Association ARMB-KAGB
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
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
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
MDPB-R Donor inventory N = 60346 Donors ARMB-KAGB
MDPB-RCordbloodinventory N=16088 CBU ARMB-KAGB
MDPB-RSearch-Transplant activity BELGIAN PATIENTS ARMB-KAGB
MDPB-RTransplant activity ARMB-KAGB
MDPB-RTransplant activity ARMB-KAGB
MDPB-R SWOT analysis ARMB-KAGB
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
Donor Recruitment action Plan ARMB-KAGB
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
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
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
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
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
THANK YOU ! MORE INFO Annual report 2011 willbeavailableonthe websitewww.infodonor.be end of June 2012 ARMB-KAGB