ARMB-KAGB

STEM CELL DONOR REGISTRIES

A. Vanhonsebrouck, MD E. Baudoux, MD 25/04/2012 1

EBMT Annual report, 2010

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.

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ARMB-KAGB Bone Marrow

Principle

Blood WBC RBC Platelets 25/04/2012 3

Stem cell sources

PBSC ARMB-KAGB BM CB 25/04/2012 4

Brief History

Decade

1950

Event

Survival of irradiated animals after letal irradiation+infusion BM First attempts humans : treatment of hematological diseases (Mathé-France, Donnall Thomas-USA) Failure of BM transplantation due to severe adverse reactions 1960 1970 1980 1990 2000 2010 ARMB-KAGB First studies of BM transplantations in leukemic patients with HLA matched Donors Hematopoietic progenitors in Cord Blood (CB) First BM Donor Registries Nobel Prize for the

HLA system

: Jean Dausset (France) First CB transplantation: E. Gluckman (France) Development of BM Donor Registries Nobel Prize for

transplantation of organs/ cells

: D. Thomas (USA) Considerable growth of BM Donor Registries and CB Banks Steep increase in use of unrelated donor stem cells (CB-donors) 19 Million donors available -0.5 Million CBU 25/04/2012 5

H

uman

L

eucocyte

A

ntigens

Father Mother

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Children

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Donors –CBU worldwide

BMDW:19 Million BMDW:0,5 Million ARMB-KAGB BMDW : Bone Marrow Donors Worldwide WMDA : World Marrow Donor Association 25/04/2012 7

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).

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MDPB-REGISTRY Goals

• 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) o Related : familial transplantation: 1/4 perfect match o Unrelated : 1/50.000 perfect match • National Collaboration o 9 donor centers/ 10 transplant centers/ 5 cord blood banks/ 5 collection centers • Part of international collaboration o o BMDW : 19 million donors – 500.000 CBU Cooperation with 65 stem cell donor Registries – 44 Cord Blood Banks ARMB-KAGB 25/04/2012 9

7 donor centers >60 000 Donors

MDPB-REGISTRY

Internet Internet Internet 2011 MDP-B Registry (Syrenad)

Unrelated donors Belgian Patients 9 Transplant centers (national patients) 5 Cord blood banks >16 000 CBUs

EMDIS ARMB-KAGB

Searching for national donors 65 INTERNATIONAL REGISTRIES >18 M DONORS 44 CB BANKS >500 000 CBUS Searching for International donors

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ARMB-KAGB

MDPB-R Donor inventory

N = 60346 Donors 25/04/2012 12

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MDPB-R Cord blood inventory

N=16088 CBU 25/04/2012 13

MDPB-R Search-Transplant activity

BELGIAN PATIENTS ARMB-KAGB 25/04/2012 14

ARMB-KAGB

MDPB-R Transplant activity

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MDPB-R Transplant activity

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MDPB-R SWOT analysis

•

S TRENGHTS

• WELL-INTEGRATED NETWORK between partners ( DC, CBB,TC, Col.C, HLA lab) Connected to REGISTRIES WORLDWIDE

W EAKNESSES

• SIZE (international context) • LOW INSTITUTIONAL support • MOST DONORS ARE FROM ABROAD (for transplantations of Belgian Patients) • ACTIVE participation with INTERNATIONAL GROUPS (WMDA, Netcord)

O PPORTUNITIES

• ACCREDITATION • Investment in NEW DATA EXCHANGE TOOLS • INCREASE INTERNATIONAL COOPERATION • NEW RECRUITMENT STRATEGIES (fe minorities) • CONTINUOUS RECRUITMENT ACTION ARMB-KAGB • Potential solutions reachable • Cancer plan • Official mandate to operate

T HREATS

• AGE/ HLA TYPING level of donor population • BIGGER transnational structures with ample funding • MORE BELGIAN STEM CELL DONORS (for Belgian-international Patients) 25/04/2012 17

MDPB-R PROJECTS 1.Donor Recruitment 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 25/04/2012 18

ARMB-KAGB

Donor Recruitment action Plan

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MDPP-R PROJECTS 1.Donor Recruitment Action Plan

ARMB-KAGB RKVL : ANT+BTO SJB : St Jan Bruges VUB : UZ Brussel GOD : Mont Godinne SFS : Service du Sang KUL : UZ Leuven 25/04/2012 20

-

-

MDPB-R PROJECTS 2. 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 -

NEW PROPOSALS – EVALUTION FOLLOWS

Optimizing test capacity of TISSUE TYPING LABORATORIES RECRUITMENT CAMPAIGNS to sensitize stem cell donors Improve the POSITION of the stem cell donor COOPERATION between MDPB-R, MDPB-vzw and BHS Financing the TRANSPLANT REGISTRY:central database with followup of patients ARMB-KAGB 25/04/2012 21

MDPB-R PROJECTS 3. 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

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IT application – Syrenad -Prometheus Global search: 28 Emdis connections

US NMDP Canada Finland Denmark BBMR Czech (Plzen) Slovakia Poland Cyprus Israel US Caitlin 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 25/04/2012 23

MDPB-R PROJECTS 4. 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 ACTION PLAN : PHASE I PHASE II

Improve recruitment of suitable donors Indicators for benchmarking IT EU application HLA typing, strategy, efficiency Refining CT work up Quality Management HLA expertise Regulatory Issues ARMB-KAGB 25/04/2012 24

THANK YOU ! MORE INFO

Annual report 2011 will be available on the website www.infodonor.be end of June 2012

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