ANNUAL REPORT 2015 · Transplant Center Services, donor search and donor selection Donor management...

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ANNUAL REPORT 2015

Transcript of ANNUAL REPORT 2015 · Transplant Center Services, donor search and donor selection Donor management...

Page 1: ANNUAL REPORT 2015 · Transplant Center Services, donor search and donor selection Donor management activities,donor registry and donor centre The foundation was created in 1988 by

A N N U A L R E P O R T 2 01 5

Page 2: ANNUAL REPORT 2015 · Transplant Center Services, donor search and donor selection Donor management activities,donor registry and donor centre The foundation was created in 1988 by
Page 3: ANNUAL REPORT 2015 · Transplant Center Services, donor search and donor selection Donor management activities,donor registry and donor centre The foundation was created in 1988 by

A N N U A L R E P O R T 2 01 5

Contact address

Europdonor FoundationPlesmanlaan 1B2333 BZ LeidenThe Netherlands

Tel:    +31 71 5685300Fax:   +31 71 5210457Web:   www.europdonor.nl / www.matchis.nl

Acknowledgements

Graphic Design: Maarten Lodewijk

Photographs by courtesy of Matchis Foundation

Leiden, 2016

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Herewith you will find the final annual report on the activities of the Europdonor Foundation. This does not mean that the Europdonor Foundation will stop all its activities but starting January 1, 2016 Europdonor has merged with its sister organisation in Nijmegen. The name of the new organisation is “Matchis” (or in more detail: Matchis Foundation, the Dutch centre for stem cell donors). Another important organisational change, which took place in 2015, was the transfer of all BMDW (Bone Marrow Donors Worldwide) activities from Europdonor to a new separate foundation called Bone Marrow Donors Worldwide.

Not only due to these organisational aspects, the year 2015 can be considered as an important year for our organisation. The recruitment of new volunteer stem cell donors in the Netherlands was very successful resulting in an increase with 28,000 donors to a total of almost 82,000 donors. It is to be expected that a similar or even higher increase will be realized in the coming years. At the end of the year 2015 the Dutch ministry of Health has provided a grant to support the activities in the Netherlands with respect to the recruitment and typing new (young) donors. Hopefully, the growth of the national potential donor pool, will lead to an increased number of transplantations of Dutch patients with stem cells of Dutch donors. At the moment, only 4% of the patients are transplanted with such a donor, which is a pity as not only the increased chance to find an HLA compatible donor but also the speed to realize the actual transplantation will be beneficial for the Dutch patients. The increase in the number of potential donors in 2015 did not lead yet to an increase in the actual number stem cell products provided by Europdonor last year. But it is to expected that the spin-off of these activities will be visible in the near future.

Also the search activities for Dutch patients have increased in 2015. A search for an unrelated donor was initiated for a total of 613 patients showing that the need for stem cell transplantation with unrelated donors is till clearly present despite the availability of alternative approaches such a haplo-identical family transplants.

I hope that the information in this annual report is useful to you and we trust that the positive trends observed in 2015 will further continue under the supervision of the newly established Matchis Foundation.

Frans H.J. ClaasChairman of the Board

Preface

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Table of Contents

1 Europdonor,theorganisation 61.1 Transplant Center Services, donor search and donor selection 61.2 Donor management activities, donor registry and donor centre 61.3 Donor Recruitment 71.4 Consultancy Activities 71.5 Bone Marrow Donors Worldwide (BMDW) 71.6 World Marrow Donor Association (WMDA) 7

2 SearchActivitiesforDutchPatients 82.1 Search activities 82.2 Confirmatory and extended typing 102.3 Work-up and shipment requests 112.4 Subsequent donation requests 122.5 Import and transport of products 132.6 Conclusion 13

3 The unrelated stem cell donors and cord blood units 143.1 Blood sample requests 143.2 The supply of Dutch stem cell products 15

4 Recruitmentandregistrationofnewstemcelldonors 174.1 Growing number of stem cell donors 17

5 FinancialPerspective 195.1 Introduction 195.2 Revenue and profit development 195.3 Expectations for 2016 205.4 Balance sheet, December 31st, 2015 215.5 Profit and loss account for the year 2015 22

6 BoardandStaff 23

7 BoardandstaffoftheStemCellDonorBank 25 Europdonor Nijmegen

8 References 26

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1.1

1.2

TransplantCenterServices,donorsearchanddonorselection

Donormanagementactivities,donorregistryand donor centre

The foundation was created in 1988 by Prof Jon J. van Rood when there was sufficient scientific evidence that stem cell transplantation with unrelated, HLA-identical donors had developed into a relatively successful treatment for patients with hemato-oncological diseases. This increased the need for a large pool of unrelated, HLA-typed, bone marrow donors. In the first year Europdonor recruited 3000 unrelated donors in The Netherlands.

Over the years, the core activities of Europdonor have developed in both scale and scope. Chapters 2 and 3 clearly show the steady increase in the number of patients and transplants and the growing number of countries participating globally in the exchange of stem cell products.

A team of professionals, with extensive knowledge of HLA and immunogenetics, efficiently and effectively process the search requests for Dutch patients in need of a stem cell transplantation. They identify potential unrelated stem cell donors or unrelated cord blood units in national and international registries and provide this information to the transplant centres (TC). Once a stem cell product has formally been requested by the TC, the Europdonor team coordinates the logistics between the TC and the supplying Donor Center/Cord Blood Bank.

The core task of the Donor Center is to effectively manage the national and international requests for blood samples, DNA samples and cord blood units as well as the coordination of the stem cell donation by the Dutch stem cell donors. This needs to be done very efficiently, so the timeline from the start of the donor search to the actual transplantation has to be as short as possible.

Europdonor,theorganisation

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1.3

1.4

1.5

1.6

DonorRecruitment

ConsultancyActivities

BoneMarrowDonorsWorldwide(BMDW)

WorldMarrowDonorAssociation(WMDA)

The recruitment and communications team is responsible for increasing public awareness about the need for stem cell donation and for registering new donors. This is done by organising publicity campaigns and keeping in touch with donors and potential donors through social media as well as donor drives. As a result of this, more people sign up to be a donor.

Since 2014, the recruitment of volunteer unrelated stem cell donors has been greatly supported by a 3-year collaboration with DKMS. The aim is to grow the national database of Dutch adult donors to a sustainable level. The main focus of the activities is to recruit younger donors and by doing this, contribute to better search results for Dutch patients.

Upon request, Europdonor staff provides immunogenetic advice about the feasibility of finding a suitable donor or cord blood unit and coordinates the search process.

BMDW is a web-based service provided and managed by Europdonor Foundation since 1989. In 2015 it was clear that BMDW would need to invest heavily in order to provide better services to the transplant centres in the future. Therefore, the board decided to transfer all BMDW activities into a new, separate foundation, called Bone Marrow Donors Worldwide, with their office remaining in Leiden. (See bmdw.org for more information)

The WMDA is a global organisation which fosters international collaboration to facilitate the exchange of high quality hematopoietic stem cells for clinical transplantation worldwide and to promote the interests of donors. The Europdonor Foundation is not only an active member of WMDA, but is is also the host of the WMDA office. (See wmda.info for more information)

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Figure 1Searches for Dutch patients (613) specified by transplant centre.

Europdonor performs the searches for unrelated donors and/or cord blood units for Dutch patients in need of an unrelated hematopoietic stem cell transplantation. There are 10 transplantation centres in the Netherlands – 8 for adults and 2 for children – located in Amsterdam, Groningen, Leiden, Maastricht, Nijmegen, Rotterdam and Utrecht.

All centres participate in the European Group for Blood and Marrow Transplantation (EBMT), the Center for International Blood and Marrow Transplant Research (CIBMTR) and are JACIE accredited.

In 2015 there was a 12% increase in the number of searches for Dutch patients compared to 2014, from 549 in 2014 to 613 in 2015. Of the 613 Dutch patients for whom an unrelated donor and/or cord blood search was initiated, 574 searches were for new patients and 39 were repeat searches. An overview of the number of searches in 2015 per transplant centre is given in figure 1. There has been a slight redistribution of patients compared to 2014, mainly due to one centre with a clear increase.

Searchactivities2.1

SearchActivitiesforDutchPatients

2

Amsterdam AMCAcademic Medical Center Amsterdam, Adults

Amsterdam VUmcVU Medical Center Amsterdam, Adults

GroningenUniversity Medical Center Groningen, Adults

Leiden - AdultsLeiden University Medical Center, Adults

Leiden - ChildrenLeiden University Medical Center, Children

MaastrichtMaastricht University Medical Center, Adults

NijmegenRadboud University Medical Center Nijmegen, Adults

RotterdamErasmus Medical Center Rotterdam, Adults

Utrecht - AdultsUniversity Medical Center Utrecht, Adults

Utrecht - ChildrenUniversity Medical Center Utrecht, Wilhelmina’s Children’s Hospital, Children

17% (106)

12% (75)

4% (25)7% (42)

11% (68)

13% (78)

5% (28)5% (28)11% (70)

15% (93)

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Figure 2Number of new Dutch patients registered and number of patients receiving their first transplant.

Table 1

The number of new patients per year and patients receiving their first transplantation are shown in figure 2.

The median time it took from the registration of a patient for an unrelated donor search to the transplantation decreased from 102 days in 2011 to 85 days in 2013 and since then it has stayed approximately the same at 86 days in 2014 and 85 days in 2015. The course and results of the searches are given in table 1.

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Number of newpatients

Number of firsttransplants

Courseandresultsofsearchesinitiatedin2010-2015

Number of searches

Searchactivity 2010 2011 2012 2013 2014 2015

Number of searches started 405 501 486 486 549 613

Search cancelled before transplantation 111 131 146 110 174 170

Reason for cancellation

- Poor clinical condition / patient died 75 77 77 68 99 112

- Indication changed / alternative therapy 11 12 29 12 30 25

- Patient withdrawal 7 12 13 7 14 10

- No acceptable donor found 9 19 20 15 15 13

- Transplant with (alternative) family donor 9 11 7 8 16 6

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Figure 3Percentage of patients that received a transplant as per diagnosis

25%

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20%

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0%

diagnoses

% of total patients

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AML MDS ALL NHL MM CLL CML MF SAA HL ImmuneSystem

Disorder

OtherMalignant

Othernon

Malignant

2015

Confirmatory HLA typing (CT) is performed to confirm the suitability of prospective donors. Usually, samples are taken from the donora and then shipped to the centre with the request. In the Netherlands, six laboratories, all accredited by the European Federation for Immunogenetics (EFI), perform the HLA typing on blood samples from unrelated donors. The number of loci and the level of resolution are tested in accordance with local protocols.

In addition, functional assays (like CTLp) are sometimes performed (for the TC’s in Groningen and Leiden) or the PIRCHE algorithm – www-pirche.org – is used (for the TC’s in Utrecht) to confirm the suitability of a potential (mismatched) donor. In 2015, 2044 samples were requested and 1392 samples (68%) were received for confirmatory or extended typing. Compared to 2014 this is an increase of 9%. The majority of the tested samples originated from Europe. The reason for the increase in the number of CT samples requested is mainly based on the increase of the number of patients.

For all blood samples that were received, the time it took for the blood samples to arrive at the centre with the request has decreased from a median time of 15 days in 2010 to a median time of 10 days in 2015 (table 2). The arrival time and availability of Dutch donors is shown for comparison. There has been a clear increase in the availability of Dutch donors since 2014, samples from Dutch donors have had a better arrival time in the years 2010-2015 and a median arrival time of 7 days was achieved in 2015.

Confirmatoryandextendedtyping2.2

The patients that received transplants in 2014 and 2015 had the following diseases, as shown in figure 3; the majority of patients receiving transplants were diagnosed with a malignant disease.

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Table 2

CTSamplesreceivedin2010-2015

AllDonors 2010 2011 2012 2013 2014 2015

Total requested 1,913 (100%) 2,017 (100%) 1,884 (100%) 1,465 (100%) 1,872 (100%) 2,044 (100%)

Total received 1,302 (68%) 1,415 (70%) 1,239 (66%) 1,047 (71%) 1,309 (70%) 1,392 (68%)

Median arrival time 15 15 13 11 11 10

Average arrival time 17.5 16.6 15.6 13 13.6 12.5

DutchDonors

Total requested 115 (6%) 104 (5%) 62 (3%) 57 (4%) 66 (4%) 105 (5%)

Total received 64 (56%) 65 (63%) 39 (63%) 34 (60%) 51 (77%) 72 (68%)

Median arrival time 13.5 12 11 10 8 7

Average arrival time 16.5 13.3 12.1 11.6 10.8 7.8

In total, 407 transplants were performed with stem cells from an unrelated donor or cord blood unit in 2015 (tables 3 and 4) compared to 369 in 2014, an increase of 10%. There were 266 work-up requests marked urgent and a combined verification typing/work-up procedure was requested for 43 patients. From the total number of work-up requests in 2015, 93 were postponed during the work-up, which is nearly the same as in 2014. Finally, there were 19 transplantations already planned for the first fewmonths of 2015.

An overview of the number of transplants by source over the last six years is shown in tables 3 and 4.

Work-upandshipmentrequests2.3

Table 3

Transplantationactivityin2010-2015

Number of transplants

Transplantationwith 2010 2011 2012 2013 2014 2015

unrelated bone marrow donor 38 44 40 23 33 30

unrelated PBSC donor 215 261 283 242 273 307

single cord blood unit 21 29 25 18 34 29

double cord blood unit 17 33 28 44 29 41

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TransplantspertypeperformedattheDutchtransplantcentres

BoneMarrow PBSC SingleCB DoubleCB Total

Amsterdam AMC , adults 1 15 7 23

Amsterdam VUmc, adults 5 45 5 55

Groningen, adults 1 40 41

Leiden, adults 1 46 4 51

Leiden, children 11 1 12

Maastricht, adults 22 3 25

Nijmegen, adults 2 40 1 43

Rotterdam, adults 1 55 12 68

Utrecht, adults 1 43 8 52

Utrecht, children 7 1 28 1 37

Total 30 307 29 41 407

Table 4

The majority of stem cell sources came from Europe, as shown in table 5. Again, as in 2013 and 2014, there is a decrease in the number of products originating from the United States of America, which is probably due to budgetary restrictions.

Table 5

Originofstemcellsources2010-2015

2010n=331

2011n=392

2012n=405

2013n=371

2014n=398

2015n=448

The Netherlands 26 (7.8%)

8(2%)

16(4.0%)

9(2.4%)

14(3.5%)

18(4.0%)

Europe (excl. The Netherlands) 243(73.4%)

306(78.1%)

299(73.8%)

286(77.1%)

324(81.4%)

367(81.9%)

United States of America 51(15.4%)

70(17.9%)

80(19.8%)

61(16.4%)

46(11.6%)

44(9.8%)

Other 11(3.3%)

8(2.0%)

10(2.4%)

15(4.1%)

14(3.5%)

19(4.2%)

The number of subsequent donations in 2015 remained the same compared to previous years; 73 requests for subsequent donor lymphocytes were received and 44 products were infused in 2015.

Subsequentdonationrequests2.4

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Since 2012, Europdonor has been licensed to import HPC Products. In accordance with the European Union Tissue and Cells Directive (EUTCD), Europdonor is required to determine whether the HPC products that will be imported are supplied from a centre (Registry or Cord Blood bank) that complies with the EUTCD. If this is the case, the products from these centres are approved for import. An overview of the origin of all products imported / distributed is given in table 5. For all 17 products in the “Other” group in 2015 (table 6), an import procedure had to be followed to determine if these products could be imported. To date, all centres that have provided products have been approved for import by Europdonor.

In the Netherlands, the total number of unrelated donor/CBU searches in 2015 increased by 64 to 613. There was also an increase in the number of patients that have received a stem cell transplant. The distribution of patients at the different centres has changed somewhat compared to 2014; one centre had a significant increase while several others saw a decrease. All searches are performed efficiently in accordance with established search procedures.

Import and transport of products

Conclusion

2.5

2.6

Table 6Import/transportofallproducts;BM,PBSC,CBandlymphocytesin2013-2015

2013n=420

2014n=441

2015n=496

The Netherlands 11(2.6%)

15(3.4%)

20(4.0%)

European Union 325(77.4%)

357(81.0%)

405(81.7%)

WMDA accredited registries outside the EU

70(16.7%)

57(12.9%)

54(10.9%)

Other 14(3.3%)

12(2.7%)

17(3.4%)

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3.1 Bloodsamplerequests

3

Table 1

Table 2

Donor Services is responsible for processing all requests for unrelated Dutch stem cell donors and cord blood units that are in accordance with the minimal criteria for transplant centres and national registries. Staff works closely with the partners at the Sanquin Donor Centres and the Donor Centre in Nijmegen as well as with the two academic hospitals that operate as collection centers. Donor Services continuously aims to improve the service to the transplant centres with a focus on the optimal care for the donor.

An important aspect of the service to the transplant centres is handling the blood sample requests. In line with the increasing number of available stem cell donors, more blood sample requests were received in 2015. It is noteworthy that 70% of the blood sample requests were for donors registered after 2011, presumably because of better HLA-typing and also the lower average age of these donors. Another important factor is the increased availability of the donors compared to 2014.

The service to the transplant centres and the availability of the donors have both improved (shown in table 1) and the interval between a request and shipment is also improving (table 2).

The unrelated stem cell donors and cord blood units

Intervalbetweendateofrequestanddateofshipmentofthesamples

Numberofdays Percentage2014 Percentage2015

<7 days 63% 70%

8-14 days 30% 25%

15-21 days 6% 4%

>21 days 1% 1%

Bloodsamplerequests&availability

2014 2015

Total number of blood sample requests 259 353

Availability 65% 69%

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Figure 1Number of stem cell donations and cord blood units provided per year.

Table 3Distribution of products.

Depicted in the following figure is the total number of donations. It decreased slightly compared to 2014. A steady decrease in the number of cord blood unit (CBU) shipments can be seen, which is in line with international developments. Also, the total number of Dutch CBUs available for selection did not increase much.

The number of bone marrow collections has not decreased further. Instead, in 2015, twice as many bone marrow products were supplied as in 2014. A bone marrow product was the transplant centre’s specific request in 6 out of 8 donations. In two cases a bone marrow collection was performed because of donor-related reasons.

Distributionofstemcelllandlymphocytesproducts

Product Netherlands WithintheEU(excludingtheNetherlands)

OutsidetheEU

Bone marrow 3 1 4

Peripheral blood stem cells 12 11 11

Cord blood units 3 1 1

Donor lymphocytes 3 4 1

Peripheral blood stem cell donations provided

Bone marrow donations provided

Cord blood units provided

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3.2 ThesupplyofDutchstemcellproducts

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Figure 2Number of cord blood units available for selection per year.

In collaboration with the Dutch Cord Blood Bank (part of the national bloodbank Sanquin), the cord blood unit data is made available for selection through Bone Marrow Donor Worldwide and EMDIS. In the following figure the total number of cord blood units that are available for selection is depicted. In 2015, the Cord Blood Bank and the National Registry have been reaccredited by Netcord Fact.

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Figure 1Number of donors in the Europdonor file

The number of donors increased by 28,134 to a total of 81,674 donors; more than a 52 % rise compared to 2014.

The total number of new registrations is 28,134, which includes 3,977 from the Stem Cell Donorbank Europdonor Nijmegen and 1,200 from the Dutch Blood Bank Sanquin.

The good recruitment results were achieved mainly through growth in online registrations and by organising donor drives. Patient-related campaigns contributed to a large extent to the growth. In January, many donors registered because of a patient-related campaign that started in November 2014. The sister of a patient, a 29-year-old mother, started the search for an unrelated donor via social media. Further to all the publicity generated through social media, the press picked up on this news, which resulted in national media coverage.

The development of effective and efficient recruitment and registration methods was one of the main strategic goals. To improve the online registration process a new website was

4Recruitmentandregistrationof new stem cell donors

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4.1 Growing number of stem cell donors

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introduced in May, with a main focus on informing and registering new donors (with buttons for call-to-action). In the Europdonor recruitment campaigns and in our publicity activities this special website was promoted, while the Europdonor corporate website continued to provide information for patients and professionals.

At the end of 2015 a grant was awarded by the Ministry of Health to support Europdonor financially because of the growing need to create more awareness and to invest in recruitment and typing of new donors. The majority of this grant will be used in 2016 to support the growth of the number of donors.

Besides the growth in numbers, the composition of the donor database changed, as shown in table 1. The percentage of men decreased in the last 3 years, partly as a result of the large number of female donors who responded to patient-related campaigns.

There has been a positive development in the average age of the donors and also in the percentage with high resolution typing.

Compositionofthedonordatabase

Donordatabasedevelopments 2013 2014 2015

Percentage men 39.3 % 36.7 % 30.8 %

Average age 39.6 37.6 30.8

High resolution typed 27 % 42 % 64 %

Table 1

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FinancialPerspective

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The influx of new, young stem cell donors that started in 2014 has continued through into 2015. The call from patients asking people to register as a stem cell donor, has created a lot of publicity and generated further growth. In 2015 there has been an increase in the number of donors by some 26,000.

Since 2014, tissue typing has been done mainly in Germany through our sister company, DKMS. Europdonor has made full use of this facility again in 2015. The tissue typing done by DKMS is of the highest quality (high resolution). This has improved the speed with which the best donor can be found. It’s expected that the influx of new Dutch donors will eventually lead to a higher number of donations from Dutch donors for Dutch patients.

RevenueThe number of requests received through the Dutch transplant centres to start a patient search increased from 549 to 612 in 2015. The revenue derived from Transplant Center Services was accordingly higher than forecast - € 1,089,586 against a budgeted € 1,006,500. In 2014, the revenue from patient related activities amounted to € 1,007,380. The number of CT (Confirmatory Typing) samples, as well as the number of actual stem cell donations from Dutch donors, were both lower than expected in 2015. The 2015 budget anticipated revenue from Donor Services of € 1,300,000. This came out at just € 760,825. In 2014 this revenue was higher at € 955,694. Stem cell products are ‘demand driven’ and therefore difficult to forecast.

On the 18th December, 2015 the Dutch Ministry of Health, Welfare and Sport (VWS) granted a one-off subsidy for the “Stem Cell Donation 2015-2016” project. The purpose of this subsidy is to finance the process of recruiting, registering and typing new donors. The total subsidy amounted to € 1,150,000, a small part of which (€ 120,000) was allocated to 2015. Total revenue increased slightly, compared to 2014, to € 2,742,979.

5.1

5.2

Introduction

Revenueandprofitdevelopment

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ExpenditureDirect costs were reduced, in direct parallel to the reduction in revenue of Donor Services, to € 355,125. An amount of € 519,000 was forecast and in 2014 direct costs amounted to almost € 456,000. Personnel costs amounted to € 1,403,580 in 2015. This is lower than forecast in the 2015 budget (€ 1,475,000) due to one vacancy not being filled. In 2014 personnel costs amounted to € 1,620,000. The average number of FTEs decreased compared to the previous year from 23 to 22. Pension costs were reduced compared to 2014 by € 28,500 due to a change in the retirement age (from 65 to 67). As mentioned before, DKMS offered to type 20,000 new donors free of charge in 2015. Additionally, VWS started the “Stem Cell Donation 2015-2016” project, which released an extra budget of € 120,000 in 2015. A total amount of € 212,000 was spent on recruiting new donors in 2015. This is substantially more than in 2014 (€ 121,000) and also more than forecast (€ 199,000). In 2015, Europdonor prepared for the merger with The Europdonor Stem Cell Donor Bank Foundation in Nijmegen (Stichting Stamceldonorbank Europdonor Nijmegen) that will take place in 2016. Also the reorganisation that was started in 2014 was successfully completed. A one-off amount of € 150,000 was spent on the merger as well as integration and reorganisation costs.

ResultIncluding this hefty one-off expense for merger and reorganisation costs, Europdonor ended this book year with a negative net result of € 85,576 in 2015, which will be deducted from the Free Reserves. Due to the demerger of BMDW, € 36,774 was added to the Free Reserves. As per 31st December, 2015, the Free Reserves are € 596,362. The Continuity Funds were created to cover the ongoing, fixed personnel and premises costs for a period of one year and they remain stable at € 1,738,000.

The Europdonor Foundation(ED) and the Stem Cell Donor Bank Foundation of Nijmegen (SEN) both worked on creating a bigger and better quality pool of Dutch stem cell donors. The ultimate goal is to give more patients a better chance to find the best matched donor available. It was decided in 2015 to join forces, resulting in a merger of ED and SEN as of 1st January, 2016. Also, a new name was chosen for the newly merged organisation: ‘Stichting Matchis, Nederlands Centrum voor Stamceldonoren’ (Machtis Foundation, the Dutch Centre for Stem Cell Donors).

The “Stem Cell Donation 2015-2016” project that was started at the end of 2015 will be continued throughout 2016 and will be completed by the end of the year. The aim is to have a pool of 117,000 Dutch donors by the end of 2016. This means that more than 35,000 new donors need to be recruited in 2016. An amount of € 1,030,000 from the subsidy provided by VWS will be made available to fund this.

From 2016 on, Matchis will work as NMDP Cooperative Registry for all Dutch transplant centres. This will mean that the invoicing for all of the donor products coming from the United States for Dutch patients will be processed by Matchis (in 2015 there were 44 stem cell products). This will lead to a strong increase in both revenue and expenses on the profit and loss account for 2016. Matchis will charge a fee for this service of € 1,500 for each patient who has received a stem cell transplant from a donor from the US. The Prometheus project that was started in 2013 is expected to be completed in 2016. As part of this project a new software information system will be developed for the registration of stem cell donors. This new system will be operational by the end of 2016.

5.3 Expectationsfor2016

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(After appropriation of result)

31-12-2015

31-12-2015

31-12-2014

31-12-2014

Assets € € € €

  Intangible fixed assets 48,314 119,753

  Tangible fixed assets 40,011 20,292

  Current assets

  Receivables

  Accounts receivable 424,806 379,147

  Other receivables 598,464 720,782

1,023,270 1,099,929

  Cash and banks 2,197,806 2,039,614

  Total assets 3,309,401 3,279,588

Equityandliabilities € € € €

  Equity

  Foundation capital 19,851 19,851

  Free funds 596,362 645,164

  Continuity funds 1,738,000 1,738,000

  Earmarked funds BMDW - 36,774

2,354,213 2,439,789

  Short-term liabilities

  Trade creditors 246,623 313,515

  Taxes 31,256 63,794

  Pensions 12,605 15,555

  Other payables 664,704 446,935

955,188 839,799

  Total Liabilities 3,309,401 3,279,588

5.4 Balancesheet,December31st,2015

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2015 2014

€ € € €

Revenues donor related activities 2,172,275 2,198,903

Fees participants BMDW 323,378 305,500

Reimbursement WMDA 247,326 224,729

2,742,979 2,729,132

Interest 14,532 19,558

Revenues 2,757,511 2,748,690

Direct cost donor related activities 355,125 464,770

Personnel 1,403,580 1,620,109

Depreciation of tangible fixed assets 14,520 20,588

Other operating expenses 1,069,862 801,884

Expenses 2,843,087 2,907,351

Balance -/- 85,576 -/- 158,661

5.5 Profitandlossaccountfortheyear2015

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6

BoardProf. F.H.J. (Frans) Claas, PhD ChairmanProf. R. (Roel) Willemze, MD, PhD SecretaryH.G.M. (Henk) van der Zanden, MSc TreasurerProf. J. (Jan) J. Cornelissen, PhD MemberB. (Bernadette) Haase - Kromwijk, MSc MemberW. (Wil) Allebes, PhD MemberE. (Ellen) Meijer, MD, PhD MemberProf. C.J.M. (Kees) Melief, MD, PhD Member

Managing DirectorC.J. (Carine) Mijnarends, MSc

Clinical DirectorM. (Machteld) Oudshoorn, PhD

Medical DirectorM.M. (Mirjam) Fechter, MD

OfficeR.J.H. (Renée) Bouwens-van der KlaauwA.M. (Armida) Moes – van Dijk

Donor Registry and Donor and Collection CentreK. (Karin) Butter-van der Werf L.J. (Leo) Ebeling, MDM.M. (Mirjam) Fechter, MDT.M.M. (Dolinda) van Kempen-Heemskerk M. (Menno) van Schaik T.A.S. (Bert) Tomson, MDY.M. (Yvette) van Weelden-Brandhorst

BoardandStaff

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Donor Relations & CommunicationL. (Lex) Liebregts from April 2015D. (Ditha) Kaarls-TschinA. (Antoinette) KorswagenJ. (Julia) de KruijffM. (Maarten) Lodewijk from May 2015

TCS Transplant Center ServicesM. (Martijn) Braakman, MScM.G.J.L. (Maarten) de Jong J.B.M. (Jacqueline) JulianusJ. S. (Jorine) KoendermanE.T.J.M. (Eline) RoeffenA. (Anouk) Tuijnman until November 2015J.M. (Hannie) v. Wolfswinkel-v.d. LindenC. (Christel) Veenstra from September 2015R. (Robyn) J.M. Heitz from July 2015

ITE.E.A. (Angelo) Melis, BSc B. (Bertjan) Nijhuis, MScR. (Robby) Tosasi, MSc until July 2015H.G.M. (Henk) van der Zanden, MSc

Development & Quality ManagementM. (Machteld) Oudshoorn, PhDJ.H. (Joke) van Gulden

Donor AdvocatesJ.L.H. (Jean-Louis) Kerkhoffs, MD, PhDJ.A.E. (Judith) Somers, MDC. (Cynthia) So-Osman, MD, PhD

Medical ConsultantsProf. A. (Anneke) Brand, MD, PhD Prof. J.J. (Jan) Cornelissen, MD, PhD Prof. J.J. (Jon) van Rood, MD, PhD

WMDA OfficeL.M. (Lydia) Foeken-van Goozen * until 31-10-2015D.E.M. (Dorien) de Kruijf-van der Zon * until 31-10-2015M. (Monique) Jöris * until 31-10-2015P. (Paulien) Kort * until 31-10-2015J. (Jorine) Koenderman from August 2015

* From 01/11/2015 the staff of WMDA is directly employed by WMDA

Honorary Member of the Friends of the Europdonor FoundationJ. (Janny) Baaij-Crooimans since December 2003

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General BoardProf. N.M.A.(Nicole) Blijlevens, PhDProf. I. (Irma) Joosten, PhD, DVM M.J.J. (Mark) van den Broek M.G.J.(Marian) van Kraaij. MD, PhD R.P.A. (Ronald) Mengedé, AA

StaffM.P. (Michel) Schaap, MD, PhD S.T.M. (Suzan) Nillesen, PhD

M.C.S. (Margot) van den Akker B.M.A.M. (Brigitte) Bär, MD, PhD A. (Arnold) van der Meer, PhD A.J.A. (Annemarie) Nijenhuis-Coenen

D.C.P. (Dyonne) Alferink-Diesveld

Donor AdvocateH.D. (Huib) de Jong, RNW. (Willeke) Pijnappel, RN

BoardandstaffoftheStemCellDonorBankEuropdonorNijmegen

7

Chairman (from July 2013)MemberMemberMemberMember

DirectorSearch coordinator and

operational manager

Donor coordinator and PRMedical Advisor

Immunology AdvisorFinancial Advisor (Financial

Department UMC St. Radboud)

Donor coordinator

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Publications

8

• Anthias C, van Walraven SM, Sørensen BS, de Faveri GN, Fechter M., Cornish J, Bacigalupo A, Müller C, Boo M, Shaw BE (2015). Related hematopoietic cell donor care: is there a role for unrelated donor registries? Bone Marrow Transplant. 50(5): 637-641.

• Van Rood J, Oudshoorn M, Fechter M, Brand A (2015). IPA en NIMA: een nieuw paradigma bij hematopoiëtische stamceltransplantatie. IPA and NIMA: a new paradigm in hematopoietic stem cell transplantation. Nederlands Tijdschrift voor Hematologie. 12(2): 58-65.

• Gratwohl A, Pasquini MC., Aljurf M, Atsuta Y, Baldomero H, Foeken L, Gratwohl M, Bouzas LF, Confer D, Frauendorfer K, Gluckman E, Greinix H, Horowitz M, Lida M, Lipton J, Madrigal A, Mohty M, Noel L, Novitzky N, Nunez J, Oudshoorn M, Passweg J, van Rood J, Szer J, Blume K, Appelbaum FR, Kodera Y, Niederwieser D (2015). One million haemopoietic stem-cell transplants: a retrospective observational study. Worldwide Network for Blood and Marrow Transplantation (WBMT). Lancet Haematol. 2(3): 91-100.

• Kosmoliaptsis V, Jöris MM, Mallon DH, Lankester AC, von dem Borne PA, Kuball J, Bierings M, Cornelissen JJ, Groenendijk-Sijnke ME, van der Holt B, Bradley JA, Oudshoorn M, van Rood JJ, Taylor CJ, Claas FH (2015). Physiochemical disparity of mismatched HLA class I alloantigens and risk of acute GVHD following HSCT. Bone Marrow Transplant 50(4): 540-544.

• Brugman MH, Wiekmeijer AS, van Eggermond M, Wolvers-Tettero I, Langerak AW, de Haas EF, Bystrykh LV, van Rood JJ, de Haan G, Fibbe WE, Staal FJ (2015). Development of a diverse human T-cell repertoire despite stringent restriction of hematopoietic clonality in the thymus. Proc. Natl. Acad Sci USA. 112(44): 6020-6027.

• Worel N, Buser A, Greinix HT, Hägglund H, Navarro W, Pulsipher MA, Nicoloso de Faveri G, Bengtsson M, Billen A, Espino G, Fechter M, Giudice V, Hölig K, Kanamori H, Kodera Y, Leitner G, Netelenbos T, Niederwieser D, van Walraven SM, Rocha V, Torosian T, Vergueiro C, Weisdorf D, Yabe H, Halter JP (2015). Suitability Criteria for Adult Related Donors: A Consensus Statement from the Worldwide Network for Blood and Marrow Transplantation Standing Committee on Donor Issues. Biol. Blood Marrow Transplant 21(12): 2052-2060.

Page 27: ANNUAL REPORT 2015 · Transplant Center Services, donor search and donor selection Donor management activities,donor registry and donor centre The foundation was created in 1988 by
Page 28: ANNUAL REPORT 2015 · Transplant Center Services, donor search and donor selection Donor management activities,donor registry and donor centre The foundation was created in 1988 by