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INTRODUCTION OF
MARROW DONOR
PROGRAM-BELGIUM
D. Latinne
D. Selleslag
E. Baudoux
14/02/2013 BHS Committees session 24 Jan 2013 1
Plan
• Worldwide picture
• Introduction MDPB
– BHS committee
– MDPB-R
• Donor population and use, recruitment
• International representation and actions
• Activity report
• Plan for 2013
• SWOT
14/02/2013 BHS Committees session 24 Jan 2013 2
Statement by the Worldwide Network for Blood & Marrow
Transplantation (WBMT)
Up to end of December
2012:
1 million HSCT have been
performed worldwide
14/02/2013 BHS Committees session 24 Jan 2013 3
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.
14/02/2013 BHS Committees session 24 Jan 2013 4
EBMT Annual report, 2011
Stem cell sources for UD-
allogeneic transplantation
14/02/2013 BHS Committees session 24 Jan 2013 5
PBSC BM CB
Donors –CBU worldwide
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BMDW:19
Million
BMDW:0,5
Million
BMDW : Bone Marrow Donors Worldwide
WMDA : World Marrow Donor Association
Marrow Donor Program-Belgium
MDPB-R
Operations (RKVL-Mechelen)
BHS
MDPB Committee
Scientific advisory committee
Policy making
MAC
QAC
Affiliated centers
Transplant centers
Donor centers
Collection centers
Cord blood banks
Representatives of the Red Cross
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Common
board
BHS committee MDP-B
Missions • Medical policy making of the national unrelated
hematopoietic stem cell donor program
• Co-management of the national donor and patient databases, list of transplant- and tissue typing centres
• Support to information campaigns adequate to hematopoietic stem cell donor actions
• Stimulation of scientific research in the field of hematopoietic stem cell transplantation
• Stimulation of cooperation at all levels in the interest of donors, patients, transplantation and tissue typing centres
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BHS committee MDP-B
Specific roles • Accreditation of centers allowed to take part to activities of the
registry of volunteer stem cell donors
• Write-up of the standard operating procedures of the Marrow Donor Program-Belgium
• Write-up of review of an agreement with the Belgian Red Cross (in the process of approval)
• Organise meetings at least twice a year. Agenda, invitation and minutes are written and circulated by the committee chairperson
• Organise yearly quality assurance reviews (assigns a member for the QA tasks)
• National and/or International representation of the Belgian Marrow Donor Program as defined by the president, chair or the committee as a whole
• All cases foreseen by the current statutes or all cases identified by the committee as part of its scope
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BHS committee MDP-B
Membership • Renewable 3-year terms.
• Applications must be submitted in writing to the president of the board.
• Full members of the committee are:
– One representative physician assigned by each Transplant Center performing allogeneic
transplantations
– One representative physician assigned by each Collection Center
– One representative physician assigned by each Donor Center
– One representative physician assigned by the national marrow donor registry
(MDP-B-R)
– One representative physician assigned by each affiliated cord blood bank
• Centres must comply with the list of criteria of the "Standard Operating Procedures of
the Marrow Donor Program Belgium"
• Each member may resign from the committee at any time.
Resignation must be notified to the board in writing
• Members of the committee must be senior associate members of the BHS
• Invited members attend meetings but have consultative voting rights.
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BHS committee MDP-B
Chairs
• Chair:
E. Baudoux (CHU Liège)
• Co-chairs:
D. Latinne (UCL St Luc)
D. Selleslag (AZ St Jan Brugge)
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Medical Advisory Committee (MAC)
MAC member Substitute
Prof. V. Deneys M. Lambermont
Prof. Noens Dr. Tessa Kerre
Dr. Lambert Dr. Xavier Poiré
Dr. C. Demanet Dr. Fabienne Trullemans
Prof. T. Devos Dr. Daan Dierickx
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Quality Assurance Committee
(QAC)
QAC members
Dr. Selleslag
Prof. Noens
Dr. Maertens
Dr. Philippe Lewalle
Prof. Beguin
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Board Posts Members
2 administrative directors of the Red Cross D. Sondag Ph. Vandekerckhove
Chair and co-chairs of BHS MDPB committee E. Baudoux – D. Latinne – D. Selleslag
Physician of MDPB-R medical team VACANT
2 medical directors of Donor Centers D. Moldenhauer
Prof. Deneys
2 medical directors of Collection Centers VACANT
2 medical directors of Transplant Centers D. Selleslag F. Baron
2 medical directors of Typing Labs Ch. Demanet
D. Latinne
2 Cord Blood Bank physicians E. Baudoux T. Devos
14/02/2013 BHS Committees session 24 Jan 2013 14
MDPB-REGISTRY (Marrow Donor Program Belgium-Registry)
OPERATIONAL
MDPB-REGISTRY
TASKS
Financial – administrative management
STAFF
Director: B. Moldenhauer
Adjunct Director: H. Broos + 2 Search coordinators Location:
MOTSTRAAT 40
2800 MECHELEN
MEDICAL ADVISE
BHS COMMITTEE MDP-B
Created end 2012
TASKS
Medical and scientific advise
CHAIRS
E. Baudoux, D. Selleslag, D. Latinne
Representatives from
• Transplant Centers (TC)
• Donor Centers (DC)
• Cord Blood Banks (CBB)
• Collection Centers (CC)
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MDPB-REGISTRY
Goals • To provide stem cells from an HLA identical
unrelated donor to national/international patients
• National Collaboration
– 9 donor centers
– 10 transplant centers
– 5 cord blood banks
– 6 collection centers
• Part of international collaboration
– BMDW : 19 million donors – 500.000 CBU
– 65 stem cell donor Registries
– 44 Cord Blood Banks
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MDPB-REGISTRY
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2011 MDP-B Registry
(Syrenad Prometheus)
Unrelated donors
Belgian Patients
5 Cord blood banks
>18 000 CBUs
7 donor centers >60 000 Donors
9 Transplant centers
(national patients)
Internet
Internet
Internet
EMDIS
Searching for national donors
Searching for International
donors 65 INTERNATIONAL REGISTRIES
44 CB BANKS
>18 M DONORS >500 000 CBUS
Donor inventory
0
10.000
20.000
30.000
40.000
50.000
60.000
70.000
1996 1998 2000 2002 2004 2006 2008 2010 2012
DNA typed
Total donors
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Demographics
Food for thought Overall median donor age:
• 48 (M)
• 45 (F)
Better age profile in newly recruited donors (2009-2012)
• 36 (M)
• 34 (F)
Look for youngest possible candidates?!
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MDPB-R
Cord blood inventory
0
1
2
3
4
5
6
7
8
9
10
Liège St Luc Bordet Leuven Gent
Mil
liers
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N=18888 CBU
Facilitation of searches for Belgian
recipients
0
50
100
150
200
250
300
350
2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Searches Transplantations
Belgian donor or CBU Foreign donor or CBU
Mobile average 5 years searches mobile average 5 years transplantations
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Initial searches +30%
Transplantations +37%
Proportion of donors used for
Belgian recipients
0%
20%
40%
60%
80%
100%
120%
2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
% Belgian
% foreign
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MUD transplantations
Belgian Recipients
0
50
100
150
200
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Foreign donor CBU Foreign donor PBSC Foreign donor BM
Belgian donor CBU Belgian donor PBSC Belgian donor BM
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Use of Belgian donors
0
10
20
30
40
50
60
70
80
90
2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Foreign recipient CBU
Foreign recipient BM
Foreign recipient PBSC
Belgian recipient CBU
Belgian recipient BM
Belgian recipient PBSC
14/02/2013 BHS Committees session 24 Jan 2013 24
Donor recruitment
0
500
1000
1500
2000
2500
3000
3500
4000
2008 2009 2010 2011 2012
TOTAL
GOAL
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International representation
• MDPB-R is a member of WMDA
• Part of Group of European Medium Size
Registries (GEMS)
• EB is WMDA secretary for Europe and
Africa
• EB is part of the WMDA Cord blood
working group and IT working group
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M. McGregor – Nov 2012 GEMS -
Benchmarking
0
1
2
3
4
5
6
7
8
9
10
Rank
International Collection Index (min 2 collections) - GEMS
Number of international
collections / 10,000
donors on Registry
GEMS: Improve donor recruitment
• Set an appropriately low age limit for registration
• Do not limit recruitment to blood donors only
• Recruitment of minorities requires careful consideration
• Recruitment methods
– Directed donor drives
– Healthcare institutions drives
– Patient directed drives
• Train staff / volunteer recruiters regularly
• Internet / social media
• Online portal for new donors
• TV, Radio
• Donor retention
GEMS: HLA
• Exploration of cheap and fast solutions for
mass HLA typing from blood-saliva
– M. Outshoorn
– P. Costeas
• Market study done and awaiting members
to join
Activity report 2012
Time Actions
January-October Preparative stage of committee
September
Recognition of MDP-B as registry
operator (Decree 05/09/2012),
with mention of upcoming BHS-Red cross
partnership
December 4
First meeting (see report, annex 2)
Election of Chair and 2 co-chairs
Fill in gaps in subgroups
Cover usual business 14/02/2013 BHS Committees session 24 Jan 2013 30
Plans for 2013
14/02/2013 BHS Committees session 24 Jan 2013 31
• 2 meetings/year
• Liaison with RKVL for daily operational management covered by E. Baudoux with collaboration of concerned people if necessary.
• Interactions with Cancer Plan, FAMHP (FAGG-AFMPS)
• Negotiations with RIZIV INAMI (Y. Beguin)
• Maintenance of operational and organizational procedures of MDP-B
• QA analysis done by DS and QA subgroup
• Training sessions for transplant coordinators
MDPB-R SWOT analysis
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STRENGHTS • WELL-INTEGRATED NETWORK
between partners
( DC, CBB,TC, Col.C, HLA lab)
• Connected to REGISTRIES WORLDWIDE
• ACTIVE participation with
INTERNATIONAL GROUPS (WMDA,
Netcord)
WEAKNESSES • SIZE (international context)
• LOW INSTITUTIONAL support
• Low rate of use of Belgian donors
• Potential solutions reachable
• Cancer plan
• Official mandate to operate
(obtained in Sept 2012 for CB only)
OPPORTUNITIES • ACCREDITATION
• Investment in NEW DATA EXCHANGE
TOOLS (Prometheus, starting April 2013)
• INCREASE INTERNATIONAL
COOPERATION (GEMS, WMDA CB
working group)
• NEW RECRUITMENT STRATEGIES
(ie minorities)
• CONTINUED RECRUITMENT ACTION
THREATS • AGE/ HLA TYPING level of donor population
• Presence of BIGGER transnational
structures with ample funding
Thanks
• BHS President
– Y. Beguin
• Committee Co-Chairs
– D. Latinne
– D. Selleslag
• MDPB-R Mechelen
– H. Broos
– V. Van Frausum
– L. Van Daele
– R. Moldenhauer
14/02/2013 BHS Committees session 24 Jan 2013 33