WMDA Financial/Activities Report 2013 www.wmda.info
CONTENTS 2 Foreword by the WMDA President: William Hwang 4 Highlights of 2013: Lydia Foeken 6 Activities of the WMDA Board Committees Board Budget Committee Fundraising Committee Nominating Committee Education Committee Accreditation Steering Committee Standards Committee Regulatory and Legal Affairs Committee 13 Activities of WMDA Working Groups and subcommittees Clinical Working Group Donor Registries Working Group Quality Assurance Working Group International Emergency Task Force Ethics Working Group Information Technology Working Group Cord Blood Working Group Asian Registries Meeting GEMS 26 Membership news 27 In Memoriam 28 Projects done by the WMDA Office 29 Corporate members of the WMDA 31 Financial Statement 32 Statement of revenue and expenditure 33 Board and Officers 2013 1 WMDA Financial/Activities Report 2013
FOREWORD BY THE WMDA PRESIDENT It has been my pleasure and privilege to serve as your President over the last one year. The WMDA is an amazing global organization reflects what we can achieve when good people round the world get together to do something great. But even as we look forward to what we can achieve together, it is also important for us to reflect on the tremendous legacy that has been handed to us. In the last two years we have seen the passing of two of the founding fathers of the WMDA who laid the pioneering groundwork for worldwide practice of bone marrow transplantation Dr E. Donnall Thomas and Dr John Goldman. Professor Thomas was the first President of our organization and Nobel Prize winner for his work as founding father of the science of bone marrow transplantation. He was a true pioneer who founded a completely new field that has given hope to many patients. The world mourned his passing on what was also the year in which the one millionth hematopoietic stem cell transplant was performed. Professor Goldman was widely respected in the field of hematology and one of the pioneers who established the foundation stones for the field of unrelated donor marrow transplantation. I personally remember him as always being distinguished in his manner, gentle in his tone and clear in his teaching. These two pioneers will be dearly missed, but they can surely rest well in the knowledge of the legacy they have left behind. The WMDA was 25 years old last year (our "Silver Anniversary") and our organization seems to have also grown considerably in the last few years. Thanks to the groundwork constructed through the last two decades of hard work, the WMDA is now meeting its mission to "foster international collaboration to facilitate the exchange of high quality haematopoietic stem cells for clinical transplantation worldwide and to promote the interests of donors". Every day now, there are around 21 stem cell products being transported across the world to facilitate transplants in another country. Our patients now have good chances in finding a donor from another part of the world when one cannot be found in their own country. Our donors also have the exciting prospect of being able to save the life of another person in another corner of the globe. Our current WMDA network now represents 71 donor registries, 160 cord blood banks, 350 donor centers, and 1,259 transplant hospitals from 48 different countries which have over 22 million registered donors. The WMDA has become the organization that many look to for standards and answers pertaining to hematopoietic stem cell donation, including bone marrow, peripheral blood and cord blood. The World Health Organization (WHO) comes to us when it wants to discuss global environment of provision of hematopoietic stem cells. Our meetings are increasingly well attended and there are even discussions under way about the prospects of setting up regional meetings. Through the cooperative effort of many registries and individuals in the WMDA, our WMDA Working Groups have published more than 30 comprehensive recommendations as well as over 40 scientific publications that have been closely referenced around the world. In the last year we also produced a very well written WMDA handbook to provide guidelines for registries starting up working through the WMDA to facilitate hematopoietic stem cell transplants. The WMDA handbook was the culmination of countless hours of work by many individuals and promises to be an excellent resource for years to come. I personally found the handbook to be beautifully designed and very well written. Our Standards and Accreditation Committees have worked exceedingly hard to plan and implement standards for bone marrow stem cell donor registries around the world. In doing so, they have put in place a system that helps to ensure the safety of donors and patients around the world. In the last year we have seen the development and implementation of new WMDA standards as well as accreditation of our 20th registry with one more registry waiting to be accredited. Our S(P)EAR Committee has also contributed to monitoring and enhancing the safety of our donors. In the last year it has launched an online reporting system and published a report on its initial efforts in developing a global system of vigilance and 2 WMDA Financial/Activities Report 2013
surveillance in unrelated donors of haematopoietic progenitor cells for transplantation. I would like to congratulate all our Committees and Working Groups with their efforts of restructuring our organization and forming our strategic plan for the next few years. I must say it is an exciting plan which both I and my President elect, Michael Boo, are looking forward to bring into fruition. The structure for our organization is also a lot clearer and the new nomination structure will now ensure continuity while refreshing of our organization with increased participation from our members. There are many issues that we will need to solve in the future and it is important that we work together and participate actively in all these discussions as we craft a legacy for those who will also follow the footsteps we leave behind. I simply must make mention of the amazing people we have in the WMDA office Lydia Foeken, our wonderful Executive Director, as well as Dorien de Kruijf, who takes charge of Communication / Meetings, and Daniela Orsini, who is responsible for Accreditation / Projects. They are the heart of our organization and are responsible for bringing all of us together as well as for supervising, maintaining and coordinating all the activities we do. Thank you! In the coming year, we will see the writing of our new book Sharing Life. With this book, we seek to reach out to the general public to share with them some of the excitement, magic, joy and humorous moments we have had in our participation in the process of facilitating an unrelated donor stem cell (including cord blood) donation and transplant. I believe the book will have a very broad reach and we have an exciting opportunity to tell the world about all the amazing and exciting things happening in this world of ours! If you have not already done so, it is not too late to participate in this effort! The future for hematopoietic stem cell transplantation (HSCT) is bright. These procedures are now safer as well as more effective and the medical community has come to accept HSCT as an established form of therapy. Many physicians now recognize that HSCT does not necessarily compete with newer therapies but serves as important adjunct to newer drugs. In recent years, work done by researchers around the world has led to tremendous advances in Hematopoietic Stem Cell Transplantation. Rigorous clinical studies and new drugs have now made transplants much safer and it possible to transplant older and sicker patients by reducing the risk of infectious and other complications. Thanks to the concerted efforts of the many members and registries of the WMDA, it is now much easier for patients to find matched donors for transplantation. Any transplant center can tell you that it is now much easier to find a suitable unrelated donor or cord blood unit than ten years ago. We are a very important part of this worldwide effort to save lives. Let us never lose that perspective in all the work we do. Have a wonderful year ahead! Dr William Hwang President, WMDA 3 WMDA Financial/Activities Report 2013
HIGHLIGHTS 2013: LYDIA FOEKEN After such a wonderful year with the launch of the strategic plan, the WMDA standards and the WMDA handbook, new challenges are coming on our way. Quality management can be described as the act of overseeing all activities and tasks needed to maintain desired level of excellence. This includes creating and implementing quality planning and assurance, as well as quality control and quality improvement. Quality management is essential for hematopoietic stem cell transplantation as it helps to ensure the patient receives a safe product whether it is a marrow, apheresis or a cord blood product. Dr John Goldman, one of our founding fathers, established the WMDA for this particular reason. He, as hematologist, needed minimum standards to ensure the quality of the bone marrow products. The first WMDA publication outlines very clearly: guidelines need to be established in relation to international bone marrow transplants transplants in which the donor is in one country and the patient in another country. How do you ensure quality as a registry today in 2014, 22 years after this first WMDA publication? Being a WMDA qualified or accredited registry is a first quality indicator for the stem cell donations facilitated and the searches coordinated by a registry. The WMDA standards are focused on registry operations and give a transplant physician the guarantee that the registry has established a system where each step from donor recruitment till transport of the product have been carried out according to internationally accepted standards. By achieving the WMDA accreditation status the work is not done. Quality improvement is a key element for the success of your registry. A possible way to achieve this is to monitor the chain from donor recruitment till delivery of the product to the transplant centre. Over the course of years the WMDA identified that over 20% of the donors are not available at a CT stage, which affects in a way the patient looking for a donor. The key performance indicators of the Quality and Regulation Working Group can serve as a helpful tool to improve the donor availability in your registry by comparing the results of your registry with colleague registries. Looking at the WMDA statistics I can see that a growing number of registries use the key performance indicators and develop strategies to achieve better donor availability and quicker delivery of blood samples to transplant centres. A third aspect is the costs. Last year it became clear that haplo identical transplants become a serious alternative for the unrelated donor. An unrelated transplant is more expensive than a haplo transplant. In the case of a multi cord transplant the price difference is even larger. In the coming years we need to think about collaboration in order to reduce the costs for the facilitation of the unrelated transplants. Ideas as registries in the cloud have already been mentioned by Michael Jones, CIO of the NMDP. The key word for the future is international collaboration. The first international workshop: Challenges and Opportunities for the small and medium size bone marrow donor registries was a first step. The session, where European registries presented their strengths and weaknesses, was inspiring. The presenters showed that the smaller European registries have different expertise. Everyone who has attended must have left feeling very positive and perhaps gained ideas how to improve their registry operation. This was the main reason why John Goldman founded the WMDA; bridges need to be built to make global stem cell exchange and global medicine a reality. Surely we will remember his ideas when we are discussing the next steps for the future. 4 WMDA Financial/Activities Report 2013
We are already preparing for the 10 th International Donor Registry Conference in London. I hope that many of you will consider attending and learning about new developments in stem cell donation as well as meeting colleagues and friends from around the world. London is a fantastic city where we will also celebrate the 40 th anniversary of the first established registry: Anthony Nolan. Lydia Foeken, Executive Director WMDA 5 WMDA Financial/Activities Report 2013
ACTIVITIES OF THE WMDA BOARD COMMITTEES BOARD BUDGET COMMITTEE Chair: Rudolf Schwabe Members: Eliane Gluckman, William Hwang, Carlheinz Mueller, Claudia Rutt, Alan Howe (until July 1st), Alexander Hilton (since September 1 st ), Bruce Schmaltz and Lydia Foeken. The Committee had two meetings and some telephone conferences in 2013. The main topic was the membership fee which has to be raised in 2014, due to more activities according to the new strategy. These activities were paid from the reserves in 2013 but generate the need for higher membership fees in future. The budget for 2014 and new requirements for the future (accreditation, IT) were approved by the board. FUNDRAISING SUBCOMMITTEE Chair: Claudia Rutt Members: Lydia Foeken and Dorien de Kruijf. The 2013 corporate members were: Abbott, Cytolon AG, DNA Genotek, Histogenetics, LabCorp and One Lambda, Thermogenesis and Life Technologies. The contributors in 2013 were: ASBMT, OnTime Couriers and Time:matters. NOMINATING COMMITTEE Chair: Michael Boo Members: Luis da Silva Bouzas, Etienne Baudoux, Pawinee Kupatawintu and Terry Schlaphoff. At the October meeting of the WMDA, the nomination committee adopted the following recommendations for WMDA board approval: Nomination process changes: Modify the number of nomination cycles to one nomination cycle per year in order to get the terms consistent for all positions based on calendar year that will be implemented by the WMDA office: May: call for nominations July/August: nomination committee review Fall meeting: approval January 1: start of elected candidate Chair/Vice Chair term changes WMDA membership requested clarification of the role of a working group vice chair and to give more WMDA members the opportunity to serve as a leader of a working group. A proposal has been developed to appoint a chair and chair elect for each working group. The term for each position is 3 years, which gives a chair the possibility to start and finish the project within his or her term. The chair elect can take over after three years. The 3 years as chair elect gives the chair elect the opportunity to create ideas for his term as chair. A chair cannot be re elected. If a chair or chair elect steps down before the term is finished, elections will be organized. The new person will be appointed for the rest of the term. 6 WMDA Financial/Activities Report 2013
Nominations for chair positions and terms Registries: Thomas Bart (nominations May 2016) Cord Blood: Sergio Querol (nominations May 2016) Medical: Bronwen Shaw till June 30; interim till January 1 Jeff Szer (nominations May 2014) IT: Martin Maiers (nominations May 2014) Quality and Regulations: Julia Pingel (nominations May 2016) All vice chair positions will finish on January 1, 2015. Nominations will be organized for the chair elect positions (starting on January 1, 2015) in May 2014. Except for the Quality Assurance and Regulation Working Group, because Salmah Mahmood will serve as chair elect starting January 1, 2014. Change to nominating process A new nomination form was presented, which outlines the tasks of each officer/committee member. The nomination form will no longer require the signatures of three WMDA members. A member can simply approach a possible candidate, sign the form and send it together with the CV of the candidate. The following candidates are nominated: Position Name Land Secretary General Machteld Oudshoorn The Netherlands VP N&S America Mary Laughlin USA VP Europe/Africa Evelyne Marry France Secretary A/AU/PI Pawinee Kupatawintu Thailand Secretary Europe/Africa Etienne Baudoux Belgium AC member CLWG Betina Sorensen Denmark AC member DRWG Terry Schlaphoff South Africa At large member AC Marie Kurikova Czech Republic AC member ITWG Kyle Nelson USA Standards Committee Anita Koumouli Cyprus The WMDA Board and General Membership approved the nominations. Because Michelle Setterholm and Lisa Phillips Johnson have left the NMDP and Alexander Schmidt has been appointed as CEO of the DKMS the position to lead the newly established working group: Quality Assurance and Regulation became vacant. The WMDA office has sent out a call for candidates who are interested to lead this working group. One candidate applied for the chair position: Julia Pingel. The WMDA Board approved the nomination of Julia Pingel. For the position chair elect two candidates applied. The WMDA Board voted with a majority for Salmah Mahmood. 7 WMDA Financial/Activities Report 2013
EDUCATION COMMITTEE Chair: Anne Marie van Walraven Members: Pam Robinett, USA, representing the Accreditation Committee Grazia Nicoloso, Switzerland, representing the Ethics WG Thomas Bart, Switzerland, representing the Donor Registries WG David Steiner, Czech Republic, representing the Information Technology WG Meral Beksac, Turkey, representing the Clinical WG Cristina Navarrete, UK, representing the Cord Blood WG Alexander Schmidt, Germany, representing the Quality Assurance WG Edward Yang, Taiwan, representing the Asian Registries Lydia Foeken, the Netherlands, WMDA Office Dorien de Kruijf, the Netherlands, WMDA Office. The 2014 Education Day proved to be successful among the approximately 150 attendees, featuring four major sessions. Prior to the start of the prepared presentations, Dr Amal Bishara was acknowledged for the award she would receive later in the weekend from the NMDP for the successful establishment of an Arab Registry in Israel. The first Education Day session, describing the "A to Z's" of EMDIS, provided a thorough explanation of the software application from both the technical and user point of view. A summary of the Small and Medium sized Registry GEMS conference held in Cyprus in October 2013 was provided next. Later in the morning, six different presenters were invited to share their experiences with WMDA Key Performance indicators and how the indicators have motivated improved operations in their Registry. Topics included: increasing CT speed and improving donor availability, improving CT collection time, identifying characteristics of the most available donors, cross validation of KPIs, measuring service time from search to transplant and the final presentation that included a video chronicling the amazing journey by DATRI registry staff to find a donor. A lunch symposium describing Next Generation Sequencing (NGS) HLA testing methods from Histogenetics included stimulating graphics describing new technology. After lunch, a set of presentations highlighted Registry experiences during actual Organizational Resiliency events (for example emergency operations response during a hurricane and business continuity during a registry office move). In addition, a panel discussion and round table discussion among attendees helped everyone learn how to prepare for future events. All presentations were engaging and featured a dozen speakers from registries around the world. 8 WMDA Financial/Activities Report 2013
ACCREDITATION STEERING COMMITTEE (ASC) Chair: Carolyn Hurley Members: Lydia Foeken, Martin McGregor and Nicoletta Sacchi. The mission of the Accreditation Committee is: To promote harmony between worldwide stem cell donor registries and cord blood banks and encourage uniformity of practice based on WMDA standards. To encourage registries to seek and empower them to achieve WMDA accreditation through the adoption of and adherence to WMDA standards. To conduct and administer the WMDA accreditation system. Five registries renewed their accreditation: Cyprus Bone Marrow Donor Registry, Japan Marrow Donor Program, The Netherlands Europdonor Foundation, United Kingdom Anthony Nolan Trust, and United States Gift of Life Foundation. In 2013, the Swiss Blood Stem Cells Registry was awarded first time WMDA qualification. Qualification, based on compliance only with WMDA benchmark standards, is now awarded to any registry taking its first step toward WMDA accreditation. As of the end of 2013, there were a total of 20 accredited registries (Table). In total, 72% of the unrelated adult volunteer donors listed in the database of Bone Marrow Donors Worldwide are included within WMDA accredited registries. Five applications were under review or approved for submission as of the end of 2013. On site inspections are now routine for second and subsequent applications. WMDA Qualified/Accredited Registry Australian Bone Marrow Donor Registry British Bone Marrow Donor Registry Canadian One Match Cyprus Bone Marrow Donor Registry Czech National Marrow Donor Registry France Greffe de Moelle Registry Israel Ezer Mizion Bone Marrow Donor Registry Irish Unrelated Bone Marrow Donor Registry Italian Bone Marrow Donor Registry Japan Marrow Donor Program WMDA Qualified/Accredited Registry The Netherlands Europdonor Foundation New Zealand Bone Marrow Donor Registry Norwegian Bone Marrow Donor Registry Swiss Blood Stem Cells Registry Taiwan Buddhist Tzu Chi Stem Cells Center United Kingdom Anthony Nolan Trust United States Gift of Life Foundation United States National Marrow Donor Program Welsh Bone Marrow Donor Registry Zentrales Knochenmarkspender Register Deutschland Day to day activities are coordinated by the Accreditation Steering Committee (ASC). The ASC also reviews any significant changes to accredited registries that have been submitted to the Office according to WMDA Standard 1.05. Its members include Carolyn Hurley, National Marrow Donor Program; Martin McGregor, Welsh Bone Marrow Donor Registry; Nicoletta Sacchi, Italian Bone Marrow Registry, and Lydia Foeken, WMDA Office. Daniela Orsini from the WMDA Office provides new administrative support. The ASC meets by conference call throughout the year. The Accreditation Committee (AC) includes one representative from each WMDA working group and an at large member. At the end of 2013, these representatives included: Kyle Nelson (Information Technology WG, National Marrow Donor Program), Arun Prasath (Cord Blood WG; Singapore Cord Blood Bank), Marie Kurikova (At large, Czech Stem Cells Registry), Betina Sørensen (Medical WG, Danish Bone Marrow Donor Registry) and Terry Schlaphoff (Donor Registries WG; South African Bone Marrow Registry). The representative from the newly formed Quality and Regulation WG has not yet been named. At the end of this year, the AC assumed responsibility for making the final decision on qualification/ accreditation based on review team reports with support from the WMDA Board if additional input is required. 9 WMDA Financial/Activities Report 2013
The AC also will review annual self evaluations from the qualified/accredited registries. The AC is now meeting by conference call as required to provide timely input on pending applications. The accreditation work is supported by 25 WMDA members who serve as ad hoc reviewers. The AC and adhoc reviewers meet in person twice a year. The Accreditation Committee held a strategic planning session in 2013. It reduced the paperwork required for reaccreditation and continues to streamline the review process. It is designing a survey to collect information on barriers to registries unable to apply for qualification and documenting the benefits of accreditation. It also created web based modules to assist in training ad hoc reviewers and is planning two training sessions focused on on site inspections in 2014. Cyprus Bone Marrow Donor Registry Japan Marrow Donor Program The Netherlands Europdonor Foundation United Kingdom Anthony Nolan Trust 10 WMDA Financial/Activities Report 2013
STANDARDS COMMITTEE Chair: Nicoletta Sacchi Members: Mats Bengtsson, Merry Duffy, Lydia Foeken, Anita Koumouli, Pam Robinett and Simona Pollichieni. The mission of the Standards Committee is: To develop, review and revise the WMDA Standards to ensure consistency with WMDA recommendations and international regulations. To liaise with the Accreditation Committee. To provide educational programs / material for registries and reviewers in collaboration with the Accreditation Committee. The Standards Committee has the main responsibility to develop and maintain the WMDA Standards. Its members in 2013 were: Nicoletta Sacchi (Italian Bone Marrow Registry), Mats Bengtsson (Tobias Registry Sweden), Irene Andersen (Norwegian Registry), Sally Gordon (Australian Registry), Pam Robinett and Merry Duffy (National Bone Marrow Donor Program USA) and Lydia Foeken (WMDA Office). During 2013 Simona Pollichieni (Italian Registry) and Anita Koumouli (Cyprus Registry) substituted Irene Andersen and Sally Gordon who do not work any more in BMD registry fields. The Standards Committee, after the open consultation with WMDA members held at the end of 2012, in 2013 finalized the new version of the Standards and presented it for approval in the spring Board meeting. The new Standards, approved in April 2013 and effective on 1st January 2014, were reordered in a more logical sequence and the items related to adult and cord blood donors were divided into two new chapters. Some new important Standards were added as the need for an accredited/qualified registry to post on the WMDA website the import/export requirements and the mandatory policy concerning the use of a central venous catheter (CVC). The Standards Committee also actively participated in the new organization of the WMDA working groups, in the review of the accreditation process with the introduction of the registry qualification step and in the constant connection with AHCTA group for the harmonization of the WMDA Standards with standards and requirements from other scientific organizations operating in the stem cell transplant and therapy field. 11 WMDA Financial/Activities Report 2013
REGULATORY AND LEGAL AFFAIRS COMMITTEE (RLAC) Chair: Lisa Phillips Johnson (until September 1, 2013) The committee was initially established in 2008 with the following mission: Provide WMDA membership with accurate, up to date and usable guidance regarding the relevant worldwide regulatory landscape Encourage proactive international collaboration towards harmonized regulatory standards The RLAC had one meeting in 2013. During this meeting a form was developed to streamline the reporting of import and export requirements on the WMDA website. For WMDA accredited registries a one page document listing the affiliated collection sites and cord blood banks is sufficient while not accredited registries will have to provide detailed information. The forms are now available on the WMDA website. The chair of the committee was Lisa Phillips Johnson, Director of Regulatory Compliance at NMDP. Lisa has left the NMDP and stopped as chair of the Regulatory and Legal Affairs Committee on September 1, 2013. During the WMDA meeting in November in Minneapolis Julia Pingel has been elected as chair and Salmah Mahmood as chair elect of the newly established Quality and Regulation Working group. 12 WMDA Financial/Activities Report 2013
CLINICAL WORKING GROUP Chair: Bronwen Shaw Vice chair: Jeff Szer. ACTIVITIES OF WORKING GROUPS AND SUBCOMMITTEES The CLWG met twice in 2013, in Brighton during the WMDA spring meeting in April and in Minneapolis during the WMDA fall meeting in November. WMDA recommendations for evaluation of donor suitability This project began as a subgroup of the Clinical Working Group, but has now developed into a formal committee. The group is led by Jennifer Philippe and Robert Lown and the membership is geographically diverse. Members: Hung Sing Yang (Australia), Rachel Pawson (United Kingdom), Mats Bengtsson (Sweden), Mirjam Fechter (the Netherlands), Willis Navarro (USA), Jerry Stein (Israel), Thilo Mengling (Germany), Pavel Jindra (Czech Republic) and CK Lee (China, Hong Kong). The group is working to harmonise the international donor suitability criteria from different registries and present consensus criteria from the WMDA. This will present a fantastic resource not only to unrelated donor registries, but also for others across the world selecting allogeneic donors. They began by considering the top 20 medical reasons for donor deferral, and have produced guidance on these. Less common criteria are now being worked on. Where controversy exists this is clearly stated on the website. The website can be accessed via the WMDA homepage at: http://www.worldmarrow.org/donorsuitability/index.php/main_page The Donor Medical Suitability Review Committee completed its recommendation paper concerning unrelated stem cell donor medical suitability. It was submitted in December for consideration in the Journal Bone Marrow Transplantation. The recommendations add value as they identify the more serious consequences for donors and/or recipients and where possible, provide supporting evidence via medical citations. To support the online resource, the working group has established a donor medical suitability review committee which is under the umbrella of the WMDA Medical Working Group. Registries wishing to receive guidance on particular criteria not currently addressed on the WIKI webpage can access the online request form that will be used to raise issue for the committee's consideration. An online operating procedure to describe the review process is available on the WMDA website as well. 13 WMDA Financial/Activities Report 2013
Subgroup: WMDA statement about safety of GCSF Members: William Hwang (Singapore), Dennis Confer (USA), Bronwen Shaw (UK) and Michael Pulsipher (USA). The subgroup is finalising a manuscript which reviews the evidence on which the WMDA GCSF statement is based. This will be submitted for publication in 2014. Subgroup: Related donor care and management Members: Bronwen Shaw (UK), Chloe Anthias (UK), Anne Marie van Walraven (Netherlands), Mirjam Fechter (Netherlands), Betina Sorensen (Denmark), Mary McCormick (USA), Grazia Nicoloso (Switzerland) and Tigran Torosian (Poland). The subgroup developed in response to the debate at EBMT 2013 in the joint EBMT/WMDA session: Should the care of related donors be performed by unrelated donor registries. This group is writing a report based on the debate, as well as investigating current models of related donor care. These differ greatly by country and the regulatory frameworks around the world. The work of this group will dovetail with the work being done by the WBMT who are developing criteria for related donor suitability. S(P)EAR committee Members: William Hwang (Singapore), Willis Navarro (USA), Jeremy Chapman (Australia), Matti Korhonen (Finland), Bronwen Shaw (UK), Lydia Foeken (Netherlands), Lisa Phillips Johnson (left September 1, 2013), Brian Lindberg (USA), Mirjam Fechter (Netherlands) and Jeff Szer (Australia). The S(P)EAR reporting system is now very well established and registries actively participate. 131 S(P)EAR were reported in 2013. This is very similar to the previous year (137). The S(P)EAR committee met 8 times in 2013, twice at the WMDA meetings and 6 times by teleconference. Each of the S(P)EAR reported was individually reviewed by committee members and discussed as appropriate. If necessary the reporting registry was approached to add or clarify the information given. Feedback was given to the membership during 2 general membership meetings and the slides from those are openly accessible on the WMDA website. Produced in 2013: The S(P)EAR committee published a manuscript describing the WMDA process: Shaw BE, Chapman J, Fechter M, Foeken L, Greinix H, Hwang W, Phillips Johnson L, Korhonen M, Lindberg B, Navarro WH, Szer J. Towards a global system of vigilance and surveillance in unrelated donors of haematopoietic progenitor cells for transplantation. Bone Marrow Transplant. 2013 Nov;48(12):1506 9. An alert concerning the use of the incorrect donor was prepared and circulated widely in the transplant and donor community. 14 WMDA Financial/Activities Report 2013
Changes for 2014: Heidi Elmoazzen (Canada) will join the committee as the new cord blood working group liaison member. Matti Korhonen remains on the group as an ordinary member. DONOR REGISTRIES WORKING GROUP Chair: Thomas Bart Vice chair I: Irina Evseeva Vice chair II: Jung Hwa Nah. The Donor Registries Working Group could mark one of its biggest achievements in the recent years: The completion of the WMDA handbook. This collaborative effort of a multitude of highly qualified contributors cannot be underestimated. Just a few facts: 244 pages, over 60,000 words of text, over 60 authors resp. major contributors, 2 ½ years of working together in 19 teleconferences / webinars. 4 group meetings (Minneapolis 11/2011, Sydney 05/2012. Minneapolis 11/2012, London 02/2013) with ca. 35 hours of group work added to the effort. A conservative estimate showed that ca. 3,000 hours of individual work (equaling over 1½ person year) were needed to make the handbook to the success it was. At the international ceremony of the Minneapolis 2013 fall meeting an award, generously funded by the NMDP, was given to a number of contributors in a festive celebration. Thanks again to everyone for their hard work! The printed version of the handbook is selling quite well; another challenge will be the perpetuation of the handbook effort, mainly in its electronic form. To reach this go, a process of regular teleconferences and group meetings, for editorial decisions is being installed currently. Project Group on Search Coordinators Certification Program This group was created in May 2013 consisting of 10 representatives of different Registries, led by Irina Evseeva and Annette Rasche, and supported by WMDA office. General principles and terms of the future Program were agreed at the first closed session during WMDA meeting in October 2013. Few teleconferences were hold in 2013, where the scope of the Program, its structure, list of speakers and examples/templates of study materials were agreed. It is planned to report the first draft of Syllabus at WMDA meeting in May 2014. Forms Committee Chaired by Thomas Wiegand, this committee has successfully completed one full year under its new structure. All 27 forms have an owner, who is primarily responsible for the routine review of the form. Each form was completely re invented and released as a fillable.pdf and new version control numbers were assigned. These newly released forms are being used by many registries worldwide. During the Fall meeting in Minneapolis, members of the Forms Committee met to review the constructive comments submitted by members. Prior to the Spring meeting in London, the next versions of the forms will be released for continued usage. We will now limit updates to the forms to once per year. The Forms Committee and the WMDA as a whole have been extremely fortunate to have had Florian Krouwel working to improve our forms, making them smart forms and introducing us all to newer technology. The use of the newer forms will make their completion more efficient and guard against errors. 15 WMDA Financial/Activities Report 2013
QUALITY ASSURANCE WORKING GROUP Chair: Alexander Schmidt Vice chair: Michelle Setterholm. Achievements of the QAWG in 2013 The Quality Assurance Working Group is preparing a quality manual to provide clear and easy guidance to registry about quality management. The manuscript has been revised to follow a template kindly provided by the Anthony Nolan Trust. Currently under the subcommittee s revision, the finalized manual will be presented to the WG and the board in spring 2014. Survey current and future technologies On an external request, the QAWG lead a survey evaluating the current and future technologies used in HLA typing. A total of 25 registries or CBB participated, mostly from small and intermediate registries. Generally, a trend toward more HLA loci and better resolution could be observed. If and in which way results will be made available to commercial companies will be decided by the board. Discrepancy Report The 2012 discrepancy report presented during the fall meeting showed an overall decline of HLA discrepancies at CT level, which can partly be correlated to higher accuracy of DNA typing compared to serology. As a proposal for 2014, an extended report was prepared in order to make the results more reliable. The draft is currently under revision by registries and CBB. During the WMDA education day, presentations about Key Performance Indicators (KPI) for registries and emergency preparedness helped to shed more light on these two important topics. We thank all contributors for their excellent work. New appointments In January 2014, Julia Pingel (DKMS, Germany) and Salmah Mahmood (Anthony Nolan Trust, UK) will assume office as chair and chair elect of the newly formed Quality and Regulation Working Group (QRWG). Beth Amer (OneMatch, Canada) will be replacing Andrea Mitterschiffthaler (Austrian BMDR) as representative of the QRWG in the Accreditation Committee. New projects The QRWG will strive to develop guidelines for audits of collection centres. Also, we would like to evaluate the ISBT labelling suitability for the registry community. Interested WMDA members are invited to contact Julia Pingel (pingel@dkms.de) and Salmah Mahmood (salmah.mahmood@anthonynolan.org) for more details. 16 WMDA Financial/Activities Report 2013
WMDA International Emergency Task Force (IETF) Chair: Monica Rocheford. The IETF WMDA can be reached by accessing and completing an online survey located on the WMDA website (http://wmda.emergency.sgizmo.com/s3/). A list of emergency contact numbers of WMDA member registries is also available on the WMDA website. The primary members of the IETF are: Lydia Foeken, WMDA Region: Europe Anthony Montague, ABMDR Region: Australia and Pacific Islands Hans Peter Eberhard, ZKRD Region: Europe Azusa Sato, JMDP Region: Asia Monica Rocheford, NMDP Region: North and South America Jennifer Philippe, OneMatch Region: North and South America (till January 1, 2014) Isaac Yaniv, Ezer Mizion Region: Africa and Middle East Substitute members for each region were also identified: Daniela Orsini, WMDA Region: Europe Raewyn Fisher, NZBMDR Region: Australia and Pacific Islands Gabi Rall, DKMS Region: Europe Midori Ogawa, JMDP Region: Asia Melanie Buetow, NMDP Region: North and South America Beth Amer, OneMatch Region: North and South America (till January 1, 2014) Jerry Stein, Ezer Mizion Region: Africa and Middle East ETHICS WORKING GROUP Chair: Anne Marie van Walraven Vice chair: Grazia Nicoloso de Faveri. During the WMDA conference in Brighton the ETWG organized an educational session with round table discussions. Participants were first invited to discuss one of the two topics on the basis of a written introduction, hypotheses and questions. Here after both topics were subsequently introduced by two presenters; Willis Navarro introduced the audience into the background, current developments of HIV and Hematopoietic Stem Cell Transplantation: Ethical Considerations. For the second topic Multiple Donation Sources Grazia Nicoloso de Faveri presented two cases and clarified the potential dilemmas and the ethical aspects. Both lectures were followed by a lively discussion with the audience. The ETWG meeting in Minneapolis was the last meeting in the old setting. An overview of the activities and achievements was shortly presented during the meeting. As of 2014 the ETWG will fuse with the CLWG into the WMDA Medical WG. Since for the majority of projects these WG were already in joint action, this seems to be a natural step in the professional organization of the WMDA. 17 WMDA Financial/Activities Report 2013
During the ETWG open meeting in Minneapolis, current projects were presented. One of the suggestions we received during the meeting in Brighton was to investigate in the possibilities of a forum where WMDA members can discuss ethical issues online. Molly McCormick presented the possibilities that she had looked into with assistance of the ITWG. Younger donors, new challenges? The ethical aspects of recruitment of younger donors were discussed during a former ETWG, but we were interested to learn how younger donors influence protocols in practice. In this light we asked Ann O Leary (Anthony Nolan Trust) and Beth Amer (OneMatch) to for their experiences during work up stage with young donors. Both presenters showed, based upon anecdotal material, the need for registries to adjust current protocols and find new ways for information, support and counselling of younger donors. INFORMATION TECHNOLOGY WORKING GROUP Chair: Martin Maiers Vice chair: Jack Bakker. The mission of the WMDA IT Working Group is: To provide a forum for the discussion of IT issues relevant to Stem Cell Donor Registries To provide a forum for the agreement on [HLA] IT standards for Stem Cell Donor Registries As part of the strategic planning process, we see two distinct categories of focus for this working group: 1. Automation of registry and cord blood bank operation and communication International Naming Standards (Global ID) Security & Infrastructure Data Communication (EMDIS, BMDW) 2. HPC (Hematopoietic Progenitor Cell) Bioinformatics HLA Standards Matching Algorithm Standards & Validation Registry Genetic Diversity (Population Genetics) International Naming Standards This subcommittee is focused on the task of developing a database, and unique IDs, for all entitles that report annual activity to WMDA. A database has been created and populated in SalesForce.com to store the registry information from the WMDA and join it with the information from the BMDW and EMDIS lists. A new WMDA ID has been assigned to all registries, but not yet distributed. Discussions with ICCBBA have been continued focusing on the need to include additional provisions for avoiding errors (a checkdigit and standard for barcoding) as well as having the identifiers provisioned by an Issuing Agency registered under ISO/IEC 15459. Security and Infrastructure This subcommittee is working an evaluation of web collaboration tools for the WMDA community. A survey was conducted which identified the priority capabilities as: real time document collaboration, discussion board/blog/wiki, issue management, e mail notifications, version control and audio conferencing. The evaluation has narrowed the search down to three platforms for final vendor selection and implementation in 2014. 18 WMDA Financial/Activities Report 2013
EMDIS Peer to peer electronic communication for WMDA registries is managed through the EMDIS (European Marrow Donor Information System). The user group and technical group chairs have held monthly teleconferences and have refined the technical group action list and refined the documentation for the messaging semantics. The EMDIS Cord pilot was completed in April 2013 with four registries successfully implementing a new inventory mirroring protocol with an expanded set of data fields. Implementation package 9 was released November 2013 with 5 major software updates. BMDW Bone Marrow Donors Worldwide has now grown to include 72 stem cell donor registries from 52 countries, and 48 cord blood banks from 33 countries for a total of 22,558,329 donors and 601,316 CBUs. The policy for validation of HLA types including deleted or renamed alleles was modified to comply with a WMDA guidance [1] which further streamlines the process of reporting data to BMDW. The NIMA match program has been further extended with two HLA mismatches including one NIMA match. HLA Data Standards This working group has contributed to the development a new system for representing HLA typing results in a machine readable text string: GL String which was published in 2013 [2]. A new electronic (XML) format for the HLA allele sequences was developed and implemented a more robust reference for alleles and their corresponding DNA sequence information. The working group is evaluating proposals for new data exchange formats for Next Generation Sequencing data. In order to help the transition away from allele codes, the committee evaluated requirements for a web service to fully automate the creation and lookup process to allow backward compatibility with registries that still depend on allele codes. Matching Algorithm Standards & Validation Cross validation of matching algorithms is a strategy for insuring quality and consistency in global searches. This working group has expanded on previous work and has developed a 3 rd validation dataset, which focuses on cross validation of predictive matching algorithms. Initial feedback from participants in 2013 has resulted in refinements to the requirements and recreation of this validation dataset. Registry Genetic Diversity This project has the goal to validate bioinformatics methods and tools for HLA haplotype frequency analysis specifically addressing unique issues of haematopoietic stem cell registry data sets. In addition to generating new methods and tools for the analysis of registry data sets, the intent is to produce a comprehensive analysis of HLA data from 20 million donors from the Bone Marrow Donors Worldwide (BMDW) database. This subcommittee published a manuscript [3] summarizing the experiments completed so far. New experimental datasets have been distributed to participants in 2013 for evaluating more complex registry style datasets with varying levels of resolution and varying numbers of loci typed. This working group starting to develop processes for performing registry match rate modeling analyses and is collaborating on a study of the interaction of CBU utilization and HLA genotype frequency. 19 WMDA Financial/Activities Report 2013
Poster Session The IT working group helped organize and fund a well attended poster session at the Fall 2013 WMDA meeting where 17 posters were presented. References 1. An update to the HLA Nomenclature Guidelines of the World Marrow Donor Association, 2012. Bochtler W, Maiers M, Bakker JN, Baier DM, Hofmann JA, Pingel J, Rist HG, Oudshoorn M, Marsh SG, Müller CR, Hurley CK. Bone Marrow Transplant. 2013 Jul 1. doi: 10.1038/bmt.2013.93. [Epub ahead of print] 2. Genotype List String: a grammar for describing HLA and KIR genotyping results in a text string. Milius RP, Mack SJ, Hollenbach JA, Pollack J, Heuer ML, Gragert L, Spellman S, Guethlein LA, Trachtenberg EA, Cooley S, Bochtler W, Mueller CR, Robinson J, Marsh SG, Maiers M. Tissue Antigens. 2013 Aug;82(2):106 12. doi: 10.1111/tan.12150.1. 3. Comparative Validation of Computer Programs for Haplotype Frequency Estimation from Donor Registry Data Eberhard HP, Madbouly AS, Gourraud PA, Balère ML, Feldmann U, Gragert L, Torres HM, Pingel J, Schmidt AH, Steiner D, van der Zanden HG, Oudshoorn M, Marsh SG, Maiers M, Müller CR. in Tissue Antigens. 2013 Aug;82(2):93 105. doi: 10.1111/tan.12160. CORD BLOOD WORKING GROUP Chair: Sergio Querol Vice chair: Merry Duffy. CBWG: Mission CBWG mission is achieving safety, efficacy and availability of cord blood use through supporting, promoting and enhancing cord blood banking and transplantation. CBWG: Strategy To develop a practical group to discuss the topics related to safety, availability and efficacy of cord blood banking and transplantation. The group plan to develop coordinated projects rather than generating outputs in isolation. As the group is representing all topics related to public cord blood banking it has the opportunity of harmonizing the different components of the value chain from donors to recipients. The organizational structure is divided in topics to cover function on three areas, observation, harmonization and guidance. There are 9 identified workpackages with a WP leader that will write down a yearly plan and will control all projects developed within their WPs. CBWG: Organisation Meetings: Five, 3 telecon and 2 face to face January: Yearly summary and new plans April: Preparation of the WMDA spring meeting May: Spring meeting (face to face meeting) September: Preparation of Fall meeting October/November: Fall meeting (face to face meeting) 20 WMDA Financial/Activities Report 2013
CBWG: Action plan for the next 3 years: Support: Identification of CBWG stakeholders (who) CB Banks Registries Transplant centres Individuals: Biomedical scientists, Technical administrators, Marketing and communication, Finances Professional societies Regulatory bodies and accrediting agencies Industry Promote: Identification of target activities (what) Promoting public cord blood banking Understanding business models for long term sustenance of the activity Promoting clinical use of cord blood units Enhance: work packages and actions (how) Observation: 1. Surveillance (Leiden office): List of stakeholders, worldwide inventory, activity information and trends Deliverable: Yearly survey on activity 2. Worldwide transplantation, analysis and outcomes (E. Gluckman): reports from Eurocord, CIBMTR and Japan Deliverable: Joined paper from Eurocord, CIBMTR, Japan on clinical outcomes and comparative summary of CB selection between continents. 3. SPEARS (H. Elmoazzen): Attending SPEARS committee and updating the group with the new reports; proposal of actions to prevent or correct recurrence. Deliverable: Preventive and Corrective action to decrease SPEARS through communication, publication of new strategies through collaboration with Netcord and Eurocord, and others Harmonization 1. Quality (A. Prasath): Attending the Standard committee; maintaining tools to compare quality (banks assessment audit; prescription information of cord blood banks; comparison of the different licensing and accreditation schemes available worldwide. Deliverable: WMDA standards for cord blood and comparative table of worldwide accreditation and licensing schemes 2. Exchange (F. Garnier): Proposal of a standardized communication algorithm between banks, registries and transplant centres; revision of the request and report forms that could be followed by the different registries. Deliverable: New communication algorithm between transplant centres registries and cord blood banks based in EMDIS cord; publication of new updated WMDA forms for CB requesting and reporting 3. CB Donation (S G Gomez): Worldwide consensus in eligibility criteria and donation models in public cord blood banking. Deliverable: Worldwide consensus in CB donor eligibility criteria (wiki access) 4. Banking operations (E. Baudoux): link between CBWG and Net cord Foundation. Presentation and discussion of the best technology for cord blood processing, testing, storage and distribution. Deliverable: Proposal of proficiency testing, sharing experiences, interchanging between CBBs Guidance 1. Sustainability (M. Boo): Discussion on organizational models, networking and pricing. 21 WMDA Financial/Activities Report 2013
Deliverable: WMDA recommendation for for CB unit pricing 2. Dissemination (Jv Bechkoven): Summary of deliverables generated from each workpackage; update of CB chapter in WMDA book; update White Paper previously published in BMT (2010) Deliverable: CBWG White paper for 2014 or 2015 ASIAN REGISTRIES MEETING Chair: Edward Yang. The Asian registries have met during the WMDA fall meeting in Minneapolis, USA. The following persons gave an update about their registries activities: C.K. Lee (Hong Kong Marrow Donor Registry), Miss Azusa Sato (Japan Marrow Donor Program), William Hwang (Singapore Cord Blood Bank) and Edward Yang (Tzu Chi Marrow Donor Registry). The Tzu Chi Marrow Donor Registry celebrated its 20th anniversary on September 19 20, 2013. NMDP, WMDA (Jon van Rood, Lydia Foeken and William Hwang), ZKRD, JMDP and KMDP sent congratulations messages. Dr. Paul Terasaki (Terasaki Foundation), Dr. Okamoto (JMDP) and President Yen (Taipei Medical University) gave lectures. Another agenda item was the Donors and Recipients Get together Meeting in which a healthy Caucasoid boy thanks his Asian donor, 9 years after transplantation. 22 WMDA Financial/Activities Report 2013
GEMS Group of European Medium Sized Registries (GEMS) was established Sept. 28, 2011, in Oslo. The background for the meeting was: European medium sized registries (approx. 20,000 100,000 ABDR typed donors) are facing several challenges. The donor pool is getting older, addition of new and young donors is a challenge, the financial situation has become more difficult, and HLA typing strategies need to be revised. The attending registries agreed to establish GEMS in an attempt to assist each other to improve and ease activities, to exchange experience and perhaps to establish collaboration in certain fields. GEMS was approved as a group within WMDA. Minutes from GEMS meetings are posted on the WMDA home pages. The GEMS group held two scheduled meetings in conjunction with the 2013 WMDA meetings (April 4, Brighton, and Oct. 16, Minneapolis). In addition, the Cyprus registry organized the 1st international workshop for the small and medium size bone marrow donor registries (Cyprus, Oct. 3 5). There were 83 participants from 23 countries. Focused on Small and Medium Size Registries These registries are facing similar operational problems and challenges and they do not have the resources to address these challenges alone. This workshop aim was to provide a forum to share experiences on common challenges faced (mostly) by the small and medium size registries and to exchange ideas on how to create opportunities for sustainability through collaboration. 23 WMDA Financial/Activities Report 2013
The Speakers Jon J. van Rood (Netherlands) Dimitri S Monos (USA) Torstein Egeland (Norway) Paul Costeas (Cyprus) Machteld Oudshoorn (Netherlands) Andreas Pavlou (Cyprus) Carlheinz Muller (Germany) Alexander Schmidt (Germany) Michael Boo (USA) Martin McGregor (UK) Michael Jones (USA) Alexandros Spyridonides (Greece) Ann O Leary (UK) Lydia Foeken (Netherlands) Joannis Mytilineos (Germany) David Steiner (Czech Republic) The presentations covered: Key Questions Where do we stand as far as the International exchange is concerned? Are we important in the big picture? What do others think about us? Is WMDA accreditation an achievable target? Where are we going? (networks, typing tech etc.) Operational Issues on Donor Recruitment Is there an optimal number of donors? Where should we focus, on number of donors or the quality of our donors (age, gender, typing)? Does online recruitment work? How? How can we engage social media? Do we need a strategy? Issues regarding donor search What information we need to start a search? (patient typing, allele frequencies, associations) How do we select the best mismatched donor? Is a haploidentical donor a good option? Is a haploidentical donor as good as a MUD, a CB? How could this influence our long term strategies? How can EMDIS help a small/medium registry? What are the issues that may need to be addressed? HLA Typing Issues What HLA typing options do we have? How is Next Generation Sequencing (NGS) different from Sanger based SBT? What are the NGS limitations Is NGS for the next generation or is it coming of age? Interactive and Participative Included training workshops in the use of Social Media, the use of new features of BMDW and the new version of Prometheus. Opportunity for twelve registries to share their experiences and present their registries activities. 24 WMDA Financial/Activities Report 2013
GEMS Membership The registries attending the Oslo meeting in 2011 came from these countries: Austria Czech Republic (Prague) Ireland Sweden Wales Belgium Denmark (Århus) Norway Switzerland Cyprus Finland Spain The Netherlands N = 13 Later, registries from the following countries have become GEMS members: Slovenia Czech Republic (Plzen) Croatia N = 3 There has been a growing interest in participating in GEMS, both from larger registries in Europe and from registries outside Europe. GEMS is currently working on a new and expanded agreement on GEMS membership, something which hopefully will be completed and approved at the GEMS Spring Meeting 2014. Until then, the registries in South Africa and Armenia have been approved as associate GEMS members [see minutes from the GEMS Meeting Oct. 16, 2013 (to be posted on the WMDA Home Page after approval)]. GEMS Mission and Vision These items are currently being developed and will hopefully be approved at the GEMS Spring Meeting 2014. GEMS Projects GEMS has earlier got an agreement for GEMS members for up front HLA typing of new donors to our registries. GEMS has established a small temporary IT Working Group with the mandate to look at possible technical IT solutions for improving patient access to donors from small and medium size registries. GEMS is running benchmark analyses and comparison of member registries, with the intention that weaker registries can learn from stronger registries. GEMS is also running other, small projects, all to see whether we can gain from collaboration and/or sharing of experience and knowledge. 25 WMDA Financial/Activities Report 2013
MEMBERSHIP NEWS MEMBERSHIP NEWS New WMDA registries In 2013 we welcomed three new WMDA registries: HPC Registry Russia and Romanian National Registry and Hema Quebec Canada. In total the WMDA has 70 registry members on December 31, 2013. Anthony Nolan The WMDA office received the announcement that Nicola Alderson is the new Registry Director of Anthony Nolan. Cyprus Bone Marrow Donor Registry organised the 1 st International Workshop: Challenges and Opportunities for the small and medium size bone marrow donor registries 3 5 October 2013, Paphos, Cyprus. Irene Andersen of the Norwegian Bone Marrow Donor Registry will be in Asia until October 2015. Swiss Transfusion SRC Ltd. celebrated in 2013 the 25 th anniversary of the Bone Marrow Programme. The Caitlin Raymond International Registry has merged into the NMDP. 26 WMDA Financial/Activities Report 2013
IN MEMORIAM Professor John M. Goldman passed away in London on December 24 th, 2013 aged 75, after three weeks of a most aggressive and fatal illness. The words below have been written by Professor Jon van Rood. He tells us how important Professor John Goldman was, also for him personally. I regard the two of us as a kind of pioneers (or cowboys, if you like) who overcame the nationalistic tendencies, which prevailed in medicine in the seventies. It started with the founding of the European Bone Marrow Transplant group and in the eighties and this was the initiative of John the World Marrow Donor Association, which worked out the rules, which made global donor stem cell exchange and with that global medicine a reality. John is often remembered for his work with and for CML patients and rightly so, but he was also in the field of stem cell transplantation a statesman, who with his charm and intelligence, perseverance and insistence made it possible that nowadays over 70% of the patients undergoing a stem cell transplant receive these lifesaving cells from a donor living abroad. I feel privileged that I have known and worked with him for such a long time and he will not be forgotten. 27 WMDA Financial/Activities Report 2013
PROJECTS DONE BY THE WMDA OFFICE The WMDA Office is the central point for all activities of the WMDA. In 2013 six persons were working for the WMDA: Machteld Oudshoorn, CEO Lydia Foeken, COO Monique Jöris (until June 1) Annual Report project Florian Krouwel (student, until August 1), S(P)EAR, forms Dorien de Kruijf, communication and events coordinator Daniela Orsini (starting June 1), accreditation and projects coordinator. In 2013 the WMDA Office has worked on multiple projects in collaboration with the responsible board committee/working group. Find below a summary of the projects worked on by the WMDA Office in the year 2013: Developed and implemented the Future Plan of the WMDA Assisted on development and implementation of the new WMDA Standards Maintained a fundraising programme for corporate members Participated in Accreditation Steering Committee Facilitated nominations procedures Published the WMDA Financial/Activities Report 2012 Arranged meeting location, planned and coordinated the WMDA Spring Meeting 2013 in Brighton, UK Coordinated the WMDA Education Day (abstracts, programme, poster session) Assisted the S(P)EAR Committee and reviewed reporting form Attended EBMT Meeting, 1 st International Workshop for the small and medium size Bone Marrow Donor Registries and the Dutch Bio vigilance Conference Lectures given at 1 st International Workshop in Cyprus, Lecture for Chinese delegates at Europdonor Foundation, Netcord Board Meeting, SOHO conference about the WMDA Annual Report Project Met with World Health Organization (WHO) to discuss global environment of provision of HPC. Supervised the development of the new WMDA logo, website and house style Revised new e PDFs for the WMDA forms Maintained the document control system for the WMDA documents Published the WMDA Annual Reports for Stem Cell Donor Registries and Cord Blood Banks Assisted in the development of and participated in the International Emergency Taskforce (IETF) Supervised and controlled the process of the production of the WMDA handbook Started the development of the online questionnaire for the WMDA Annual Reports Assisted in the development of global ID numbers for registries Revision of the house rules Implemented the registries holiday calendar Implemented the registries emergency contact list Starting with collection stories second WMDA book: Sharing Life Wrote chapter for the book: Cord Blood Stem Cells and Regenerative Medicine. Participated in the pilot project for the web collaboration tool. Facilitated HLA Technology Survey. 28 WMDA Financial/Activities Report 2013
CORPORATE MEMBERS OF THE WMDA The WMDA Office agreed with its Silver, Golden and Platinum corporate members 2014 to incorporate a notification of their company in the Financial/Activities report 2013: Histogenetics: Platinum corporate member 29 WMDA Financial/Activities Report 2013
LabCorp: Silver corporate member 30 WMDA Financial/Activities Report 2013
FINANCIAL STATEMENT Statement of Financial Position As of December 31, 2013 In Euro 2013 2012 Assets 546,118.00 Long term Assets 0.00 Material fixed assets 0.00 Notebook 0.00 Current Assets 546,118.00 Stock 1.00 Receivables 360.00 Costs paid in advance 0.00 Cash at bank 545,757.00 Liabilities 546,118.00 Net Assets 381,559.00 Remaining reserves 332,610.00 Reserves for special purposes 11,300.00 Reserves for accreditation audits 37,649.00 Current Liabilities 164,559.00 Paid in advance 60.00 Accounts payable 164,499.00 31 WMDA Financial/Activities Report 2013
STATEMENT OF REVENUE AND EXPENDITURE 2013 2012 Operating revenues 245,313.55 Contributions 175,830.00 Donations 36,900.00 Qualification fee 2,000.00 Ongoing accreditation fee 20,000.00 Interest and other income 10,583.55 Expenses 192,620.81 Staff costs 156,050.73 Office costs 2,735.82 Accreditation staff costs 8,448.26 Accreditation costs (exclusive staff) 1,113.24 Accreditation onsite costs 6,974.54 Travelling costs 11,860.17 Meeting expenses 0.00 Other costs 5,438.04 Operating surplus 52,692.74 32 WMDA Financial/Activities Report 2013
BOARD & OFFICERS 2013 Executive Committee: William Hwang, MD, President Michael Boo, JD, President elect Eliane Gluckman, MD PhD, Past President Jeremy Chapman, MD, Secretary General Machteld Oudshoorn, PhD, Chief Executive Officer Rudolf Schwabe, PhD, Treasurer Board Officers: Edward Yang, MSc, Vice president Asia, Australia and Pacific Islands Carlheinz Müller, MD, PhD, Vice president Europe and Africa Dennis Confer, MD, Vice president North and South America Etienne Baudoux, MD, Secretary Europe and Africa Luis da Silva Bouzas, MD, PhD, Secretary North and South America Pawinee Kupatawintu, MSc, Secretary Asia, Australia and Pacific Islands Bronwen Shaw, PhD, Chair Clinical WG Thomas Bart, MD, Chair Donor Registries WG Martin Maiers, MS, Chair Information Technologies WG Anne Marie van Walraven, MSc, MPA, Chair Ethics WG Alexander Schmidt, MD, Chair Quality Assurance WG Sergio Querol, MD, PhD, Chair Cord Blood WG Jon van Rood, MD, PhD, President Emeritus COLOFON Publisher: World Marrow Donor Association WMDA, Leiden 2014 ADDRESS: WMDA Plesmanlaan 1 B 2333 BZ Leiden The Netherlands T: +31 71 5686366 F: +31 71 5210457 E: mail@wmda.info W: www.wmda.info 33 WMDA Financial/Activities Report 2013