CZECH STEM CELLS REGISTRY - darujzivot.cz

ANNUAL REPORT 2015

CZECH STEM CELLS REGISTRY

INSTITUTE FOR CLINICAL AND EXPERIMENTAL MEDICINE Czech Stem Cells Registry

Stránka 2 z 12

Tel.: +420 261 361 011/2346 Fax: +420 261 362 370 www.darujzivot.cz

Vídeňská 1958/9 140 21 Praha – Krč IČ: 00023001 DIČ: CZ00023001

CSCR ORGANIZATIONAL STRUCTURE Head of the registry: Marie Kuříková, MA Medical supervisor: Lenka Záhlavová, MD Coordinators: Irina Kolaříková, MA Iveta Böhmová – financial administration Donor centre: Jana Švarcová, MD Ludmila Březinová, MA, RN Gabriela Hošková, BS, RN

Membership: Bone Marrow Donors Worldwide World Marrow Donor Association

Cooperating transplant centres in the Czech Republic: Institute of Hematology and Blood Transfusion, Prague (IHBT) Internal Clinic of Hemato-oncology, University Hospital Brno (UH Brno) Pediatric Hemato-oncology Clinic, University Hospital Motol, Prague (UH Motol)

Recruitment centres: Benešov Hospital, Hematology and Transfusion Department University Hospital Brno, Department of Transfusion Medicine and Blood Bank Čáslav Hospital, Transfusion Department Hořovice Hospital, Transfusion Department Jihlava Hospital, Hematology and Transfusion Department Kadaň Hospital, Transfusion Department Mladá Boleslav Hospital, Transfusion Department Pardubice Hospital, Transfusion Department Praha - IKEM, Czech Stem Cells Registry

- University Hospital Královské Vinohrady, Transfusion Department - Thomayer Hospital, Transfusion Department - Institute of Hematology and Blood Transfusion, Transfusion Department - General University Hospital, Transfusion Department

Příbram Hospital, Hematology and Transfusion Department Žatec Hospital, Transfusion Department


Stránka 3 z 12



The Czech Stem Cells Registry, former Czech Bone Marrow Donor Registry, was founded in 1991 at the Institute for Clinical and Experimental Medicine and is participating within international network of more than 60 registries around the world. Bone marrow transplant became a common treatment over the past twenty years and it helps save lives of more and more patients. Transplants wouldn‘t be possible without dedication of donors who are willing to help seriously ill persons anywhere around the world. Registry serves as mediator and provider of services related to the bone marrow/stem cell donation.

CSCR activities

Recruitment of donors

HLA typing (in cooperation with EFI / ASHI accredited laboratory) Maintenance of donor and cord blood unit database Searches for Czech patients in Czech and international registries. Repeated searches are

performed upon request. Searches in CSCR database for international patients Blood sample procurement for confirmatory typing

Donor work-up requests coordination and PBSC / BM / DLI procurement CBU requests coordination incl. further HLA typing, DNA shipment, CBU procurement Coordination of the graft transport


Stránka 4 z 12



PROMOTION OF STEM CELL DONATION IN 2015

We registered 2032 new donors in 2015 which is highest number of donors registered in last 12 years. As in previous years we strove to promote stem cell donation to be important topic discussed in our society. Various lectures, sport evens and workshops for transfusion centers were held.

Czech Biathlon Union - took active part in promotion of stem cell donation as in previous years - biathletes shot a short film promoting donation - Olympic team visited adult inpatient ward in Institute of Hematology and Blood Transfusion to support patients and bring them small gifts. - Registry representatives together with donors and patients were invited to the National championship in summer biathlon - Registry representatives attended gala show – Biathlete of year 2014 JC DECAUX Thanks to the cooperation with JC DECAUX registry had the opportunity to attract attention of both Prague citizens and visitors – our banners were posted in the city light vitrines and metro stations.

MALEVIL CUP 2015 This international mountain bike race hosted recruitment drive for registry. Czech cross-country skier and Olympic medallist Lukáš Bauer gave a pair of his skis and biathlon national team T-shirts with their autographs for auction. Biathletes sent their coach as an ambassador to participate in one of the races as well as supporter of the registry. “Black horses” - Team of disabled bikers decided to financially support the registry during this event Auction raised 25.000,- CZK and was fully spent of typing of new donors.

COOPERATION WITH UNIVERSITY STUDENT ENTREPRISE – NA DŘEŇ This was our second year of cooperation. Whole May was dedicated to bone marrow donation. Students organized several sport and cultural events to inspire young people to sign up for the

registry. Registry staff held lectures and were available for registration of potential donors on the spot. MILUJTE SVÉ SRDCE (Love your heart) Event for wide public organized by the hospital where we are located – Institute of Clinical and Experimental Medicine and was launched by our prominent cardiologist Jan Pirk together with mayor of Prague and main coach of Czech Biathlon team. Registry staff provided information about stem cell donation during duration of the event.


Stránka 5 z 12



SPARŤANSKÁ KREV 2015 (Spartan Blood) Traditional charity event of one of the leading ice hockey teams – HC Sparta. Registry staff promoted stem cell donation during social event in Prague city centre shopping mall and throughout whole November in transfusion centre of General university hospital. SUPPORT LESBIENS Pop-rock group members who met registration condition joined our registry and started to promote registry

work. They composed song which they performed and filmed together with actress and performer Iva

Pazderkova. Music clip with its story hints the topic of stem cell transplant and donation. Profit from sale of

the single was donated to the registry.

WORLD MARROW DONOR DAY First World Marrow Donor Day in the history was celebrated on Saturday 19th September

2015. Our registry joined this event which aims to thank more than 26 million people in 52

countries who voluntarily and altruistically give hope for life to people suffering from

haematological diseases.

Technical University (Liberec city)

Third annual registration drive was held at the university campus organized and promoted by Student Union.

New donors strengthened our community.


Stránka 6 z 12



We deferred 2580 donors from the registry. The main reason was that we decided to change upper age

limit for registration from 60 to 55 years.

21612 22681 23976 24233

3923 4008 4110 4149 1701 1696 1711 1707

0

5000

10000

15000

20000

25000

30000

2012 2013 2014 2015

Number of registered

Donors

Czech CBUs

Slovak CBUs

0

500

1000

1500

2000

2500

deathafter

donationmedicalreason

agepersonalreason other

reason

1 8 68

2475

7 21

Donors deleted


Stránka 7 z 12



DONOR RECRUITMENT

737

1295

0

200

400

600

800

1000

1200

1400

18-25 26-35

Newly register - age

872

1160

0

200

400

600

800

1000

1200

1400

muži/male ženy/female

Newly registered - gender

1083 1378

1734

2032

189 67 127

40

0

500

1000

1500

2000

2500

2012 2013 2014 2015

Newly registered

donors

Czech CBUs


Stránka 8 z 12



TYPING REQUEST AND WORK-UPS 98 extended typing results were distributed to both Czech and foreign transplant centres 59 verification typing samples were sent to both Czech and foreign transplant centres and IDM testing of donors were performed

8 collections took place in our affiliated collection centre 1 CBU was released for transplant

1 1 1 1

2

1 1

0

1

2

3

4

5

6

Belgium CzechRepublic

France Spain USA

Graft distribution

Bone Marrow PBSC CBU


Stránka 9 z 12



DONOR SEARCH We started search for 155 Czech patients newly indicated for HCT.

More than 23.000 preliminary search requests from abroad were processed by our automated search system. About 100 of the search requests were handled manually.

101 123 133

174 148

134 138 129 144 155

0

50

100

150

200

2006 2007 2008 2009 2010 2011 2012 2013 2014 2015

Trend in donor search for Czech patients

IHBT Prague 52%

UH Motol 19%

UH Brno 18%

CNMDR Pilsen 11%

Searches for particular TCs

11000 12700 14062 15136 16677 17659 18724

20719 22025 23126

2006 2007 2008 2009 2010 2011 2012 2013 2014 2015

Trend in donor search for patients from abroad


Stránka 10 z 12



DISTRIBUTION OF GRAFTS FOR CZECH PATIENTS

91 grafts were infused from abroad donors

5

1

3

19

1 57

1

3

1

Francie/France

Itálie/Italy

Izrael/Israel

Polsko/Poland

Portugalsko/Portugal

SRN/Germany

Švédsko/Sweden

UK

USA

7

13

2 3 1 0 1

9

0 0 0 2 2

39

1 0 0

11

0

10

20

30

40

50

BM PBSC CBU 2.TX PBSC 2. TX BM DLI

Transplants performed in Czech TCs in cooperation with CSCR

UH Motol

UH Brno

IHBT


Stránka 11 z 12



ACKNOWLEDGEMENT

We would like to express our gratitude and great thanks to all people who supports us in our work: individual donors, companies, various institutions and schools. Big thank you to all of you who offered your time and effort to help us during the recruitment drives and other events. Special thanks to all of you who decided to register last year and especially to those who underwent collection of hematopoietic cell. Your decision may have helped save someone’s life. Hematopoietic cell donation is exceptional act which deserves respect and emulation.

THANK YOU


Stránka 12 z 12



© Czech Stem Cells Registry, IKEM

February 2016

Documents

CZECH STEM CELLS REGISTRY - darujzivot.cz