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

14/02/2013 BHS Committees session 24 Jan 2013 6

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

14/02/2013 BHS Committees session 24 Jan 2013 7

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

14/02/2013 BHS Committees session 24 Jan 2013 8

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.

14/02/2013 BHS Committees session 24 Jan 2013 10

BHS committee MDP-B

Chairs

• Chair:

E. Baudoux (CHU Liège)

• Co-chairs:

D. Latinne (UCL St Luc)

D. Selleslag (AZ St Jan Brugge)

14/02/2013 BHS Committees session 24 Jan 2013 11

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

14/02/2013 BHS Committees session 24 Jan 2013 12

Quality Assurance Committee

(QAC)

QAC members

Dr. Selleslag

Prof. Noens

Dr. Maertens

Dr. Philippe Lewalle

Prof. Beguin

14/02/2013 BHS Committees session 24 Jan 2013 13

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

14/02/2013 BHS Committees session 24 Jan 2013 17

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

14/02/2013 BHS Committees session 24 Jan 2013 20

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

14/02/2013 BHS Committees session 24 Jan 2013 23

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

14/02/2013 BHS Committees session 24 Jan 2013 26

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

14/02/2013 BHS Committees session 24 Jan 2013 32

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