STEM CELL STEM CELL DONOR DONOR

REGISTRIESREGISTRIESA. Vanhonsebrouck, MD

E. Baudoux, MD

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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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EBMT Annual report, 2010

PrinciplePrinciple

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Blood

RBC

Platelets

WBC

Bone Marrow

Stem cell sourcesStem cell sources

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PBSC BM CB

Brief HistoryBrief HistoryDecade Event

1950Survival of irradiated animals after letal irradiation+infusion BMFirst attempts humans : treatment of hematological diseases

(Mathé-France, Donnall Thomas-USA)

1960 Failure of BM transplantation due to severe adverse reactions

1970

First studies of BM transplantations in leukemic patients with HLA matched Donors

Hematopoietic progenitors in Cord Blood (CB)First BM Donor Registries

1980Nobel Prize for the HLA system: Jean Dausset (France)

First CB transplantation: E. Gluckman (France)Development of BM Donor Registries

1990Nobel Prize for transplantation of organs/ cells:

D. Thomas (USA)Considerable growth of BM Donor Registries and CB Banks

2000 Steep increase in use of unrelated donor stem cells (CB-donors)

2010 19 Million donors available -0.5 Million CBU

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HHuman uman LLeucocyte eucocyte AAntigensntigens

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Father Mother

Children

Donors –CBU worldwideDonors –CBU worldwide

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BMDW:19 Million

BMDW:0,5 Million

BMDW : Bone Marrow Donors WorldwideWMDA : World Marrow Donor Association

MDPB-REGISTRYMDPB-REGISTRY(Marrow Donor Program Belgium) (Marrow Donor Program Belgium)

• HISTORY : 1989 Belgian Stem Cell Donor Registry• ADDRESS : MOTSTRAAT 40, 2800 MECHELEN• COMPOSITION

MDPB-REGISTRY

TASK: FINANCIAL – ADMINISTRATIVE MANAGEMENTSTAFF: DIRECTOR: A. VANHONSEBROUCK Adjunct Director + 2 Search coordinators

MDPB-VZW/ASBL

TASK: MEDICAL AND SCIENTIFIC ADVISEPRESIDENT : E. BAUDOUXRepresentatives of Transplant Center (TC), Donor Center (DC), Cord Blood Bank (CBB) and Collection Center (CC).

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MDPB-REGISTRYMDPB-REGISTRYGoalsGoals

• 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 matcho Unrelated : 1/50.000 perfect match

• National Collaborationo 9 donor centers/ 10 transplant centers/ 5 cord blood banks/ 5 collection centers

• Part of international collaboration o BMDW : 19 million donors – 500.000 CBUo Cooperation with 65 stem cell donor Registries – 44 Cord Blood Banks

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MDPB-REGISTRYMDPB-REGISTRY

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2011MDP-B Registry

(Syrenad)Unrelated

donorsBelgian Patients

5 Cord blood banks

>16 000 CBUs

7 donor centers>60 000 Donors

9 Transplant

centers(national patients)

Internet

Internet

Internet

EMDIS

Searching for national donors

Searching for International

donors65 INTERNATIONAL REGISTRIES

44 CB BANKS

>18 M DONORS >500 000 CBUS

MDPB-R MDPB-R Donor inventory Donor inventory

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N = 60346 Donors

MDPB-RMDPB-RCord blood inventory Cord blood inventory

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N=16088 CBU

MDPB-RMDPB-RSearch-Transplant activitySearch-Transplant activity

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BELGIAN PATIENTS

MDPB-RMDPB-RTransplant activityTransplant activity

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MDPB-RMDPB-RTransplant activityTransplant activity

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MDPB-R MDPB-R SWOT analysisSWOT 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

•MOST DONORS ARE FROM ABROAD (for transplantations of Belgian Patients)

•Potential solutions reachable• Cancer plan• Official mandate to operate

OPPORTUNITIES•ACCREDITATION•Investment in NEW DATA EXCHANGE TOOLS•INCREASE INTERNATIONAL COOPERATION•NEW RECRUITMENT STRATEGIES (fe minorities)•CONTINUOUS RECRUITMENT ACTION

THREATS•AGE/ HLA TYPING level of donor population

•BIGGER transnational structures with ample funding

•MORE BELGIAN STEM CELL DONORS (for Belgian-international Patients)

MDPB-R PROJECTS MDPB-R PROJECTS 1.Donor Recruitment Action Plan1.Donor Recruitment Action PlanSITUATION 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

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Donor Recruitment action Donor Recruitment action Plan Plan

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MDPP-R PROJECTSMDPP-R PROJECTS1.Donor Recruitment Action Plan 1.Donor Recruitment Action Plan

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RKVL : ANT+BTO SJB : St Jan Bruges VUB : UZ BrusselGOD : Mont Godinne SFS : Service du Sang KUL : UZ Leuven

MDPB-R PROJECTSMDPB-R PROJECTS2. CANCER PLAN2. 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

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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

MDPB-R PROJECTSMDPB-R PROJECTS3. IT APPLICATION3. 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 registriesEMDIS : connection with 27 countries

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IT application – Syrenad -PrometheusIT application – Syrenad -PrometheusGlobal search: 28 Emdis connections

US NMDPUS Caitlin

Canada

South Africa

Taiwan

Cyprus

Czech (Plzen)

PolandSlovakia

SYRENAD: 15

DenmarkBBMR

Finland

Israel

Australia

PROMETHEUS : + 12 EMDIS connections

EUROPE :Germany,Switzerland,Spain, France,Italy, Netherlands,UK-Wales, Austria, Sweden, Norway, Czech R.

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MDPB-R PROJECTSMDPB-R PROJECTS4. MEDIUM SIZED 4. MEDIUM SIZED

REGISTRIESREGISTRIES-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

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ACTION PLAN : PHASE I PHASE II

Improve recruitment of suitable donors IT

Indicators for benchmarking EU application

HLA typing, strategy, efficiency Quality Management

Refining CT work up HLA expertise

Regulatory Issues

THANK YOU ! MORE INFOTHANK YOU ! MORE INFO

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Annual report 2011 will be available on the website

www.infodonor.be end of June 2012