WMDA Activities Report 2014 www.wmda.info
CONTENTS 2 Foreword by the WMDA President 2013 2014: William Hwang 4 Highlights of 2014 Planning of 2015 6 Activities of the WMDA Board Committees Accreditation Steering Committee Finance Committee Nominating Committee S(P)EAR Committee Standards Committee 12 Activities of WMDA Working Groups Cord Blood Working Group Information Technology Working Group Medical Working Group Quality & Regulations Working Group Registries Working Group Group European Medium Sized Registries Asian Registries 26 Membership news 28 In Memoriam 29 Projects done by the WMDA office 32 Financial statement 2014 33 Statement of revenue and expenditure 2014 34 Board and officers 2014 1 WMDA Activities Report 2014
FOREWORD BY THE WMDA PRESIDENT 2013-2014 Dear friends, It is with deep sense of gratitude that I write this letter to you as we look forward to a bright new year ahead in 2015. The WMDA is a unique in that it is a truly global organisation that is founded on how an altruistic gift of life from one living individual could help another person somewhere else in the world. In my last two years as president, I have been blessed to work with wonderful individuals who have made a difference through the work that they do. The first person I must thank is Lydia Foeken, our Executive Director. Lydia has been at the heart of all the activities of the WMDA, handling diverse issues in the international arena with maturity, skill and grace. Her annual updates on the international status of unrelated donor and cord blood transplantation is something we all look forward to. We very much also want to thank our wonderful Dorien de Kruijf, who has assisted Lydia and helped facilitate the activities of our different groups with amazing efficiency. I would venture to say that many of the ideas and projects we have had would not have borne fruit without the groundwork done by both Lydia and Dorien. Both of them also put in tremendous work to help put together "Sharing Life", a book that will tell the world about what we do and that will be our legacy for many years to come. Special mention must be made of Monique Jöris, who came in to help shape the book in its final stages with her amazing artistic sense. Tremendous gratitude also goes to Jeremy Chapman, our previous Secretary General, as well as Machteld Oudshoorn, our current one. Both of them have served to guide the organisation, often in the background, giving advice to the staff of the WMDA office as well as the WMDA board. The organisation has greatly benefited from their wisdom and maturity. I am looking forward to the Presidency of Michael Boo. In the last few years, he is provided tremendous insight and guidance for the development of the WMDA, serving not only as president elect, but also as Nominating Committee chair. He has provided invaluable support for my term and will make an excellent president. A special word must be said about Rudolf Schwabe, our Treasurer as well as Chair for our Finance Committee, who we affectionately call Rudy. Rudy has helped look after the finances of our organisation for many years, dealing with complicated issues with meticulousness and tact. We are indebted to him. I am grateful to the Vice Presidents and Secretaries of our various regions for lending their experience and intellect to help shape the WMDA. From Europe and Africa, we have Evelyne Marry and Etienne Baudoux; from North and South America, Mary Laughlin and Luis Fernando de Bouzas; and from Asia and Pacific Islands, Edward Yang and Pawinee Kupatawintu. Needless to say, our organisation could not have become what it is today without the tremendous work put in by our various committees and their chairpersons. Where would Accreditation be without the intrepid and inimitable work of Carolyn Hurley and her team? This would also not have been possible without the high, but realistic standards set by Nicoletta Sacchi and her team. Our S(P)EAR programme would not have become the defining international program that it is today without the work put in by Bronwen Shaw and her team. Our Working Group chairs have also successfully redefined and expanded the scope of the various groups they lead. Jeff Szer and Bronwen Shaw, and many others in the Medical Working Group have successfully embarked on many projects like the Donor Suitability Wiki. Sergio has managed to energize the Cord Blood Working Group into working on many exciting projects that will surely shape the landscape for cord blood banks for many years to come. Thomas Bart, and the many wonderful people in the Donor Registries Working Group, have done an amazing job while leaving a tremendous legacy in the WMDA handbook A Gift for Life, which will serve as an important reference for many years to come. Julia Pingel and her team in Quality and Regulation Working Group have successfully given guidance and leadership as our registries navigate the increasing complex world of rules surrounding stem cell donation. Then we have our hyper intellectual team at Information Technology, led by Martin Maiers. 2 WMDA Activities Report 2014
Through the years, they have actually managed to bridge the gap between what we need and how information systems can actually make into reality. The progress we have made in having a Global ID as well as global match strategies certainly speak volumes on what has been done and what can be accomplished in our near future. Last, but not least, we must thank our President Emeritus, Jon Von Rood as well as the many presidents we have had in the WMDA. Michael Boo and I are grateful to our immediate predecessors, Effie Petersdorf, Eliane Gluckman, Mary Horowitz, Torstein Egeland, Jeremy Chapman, Gosta Gahrton and John Hansen as well as those before them, who have helped to shape, transform and elevate the WMDA to new heights that have enabled us to see further and reach higher than ever before. Each president has given a special touch and direction to the WMDA that has led it to what it is today. There are many other names that I have not mentioned in this letter I have kept the mentions mainly to the current chairs and board members as well as staff of the WMDA and I do hope you will forgive me if I did not mention every one. But it was truly my privilege to have worked with so many wonderful individuals, from whom I have learned so much, helping them to realize their visions. William Hwang, MD President, WMDA 2013 2014 3 WMDA Activities Report 2014
HIGHLIGHTS 2014 - PLANNING OF 2015 With great pleasure we present the WMDA Activities Report 2014, providing you with detailed information on the work done by the WMDA office, as well as summaries of the work of the WMDA board committees and working groups in 2014. I would like to take the opportunity to thank the members of the WMDA and the WMDA office colleagues for their considerable support and assistance. Let us quickly look back to 2014 and move the association forward to a wonderful 2015. For 2014, we are looking back to the well attended International Donor Registry Conference Meeting in London, United Kingdom where we had the pleasure of welcoming over 300 professionals in the field of hematopoietic stem cell donation and transplantation. The colleagues of the Anthony Nolan put together an exciting scientific programme including a social programme with an act of Amy Winehouse look alike and a reception in the Houses of Parliament. The meeting was fantastic organised; even the sunny weather was delivered timely. 2014 will end with significant changes in the leadership of three WMDA working groups. For many years Martin Maiers and Jack Bakker were the leaders of the Information Technology Working Group. They formed the working group and implemented IT in the genes of the WMDA members. Matt Prestegaard and Hans Peter Eberhard will have the challenging task to take over and to find a way to educate Information Technology to the WMDA community. The Donor Registries Working Group was leaded by Thomas Bart, Jungwah Nah and Irina Evseeva. Thomas will be remembered as Mr. Handbook. He initiated this huge project, which will be the cornerstone of the WMDA in the future. He inspired Irina Evseeva and Annette Rasche in leading a big project. As new leaders of the donor registries working group they have initiated new challenging WMDA project: certificate programme for search coordinators. The pilot looks promising and the plan is to launch the programme in September 2015 officially. The Clinical and Ethics Working Group merged into the Medical Working Group also changed their leadership. Anne Marie van Walraven and Grazia Nicoloso were able to create the dialogue between the WMDA members through organizing lively debates on ethical issues. Bronwen Shaw who has seen many SEAR/SPEAR reports served as chair of the Clinical Working Group and the SPEAR Committee for many years. She won the sympathies of the membership by her way of presenting the SEAR/SPEAR reports in an educational way to the WMDA membership. We are happy to have her still involved in the SPEAR Committee and as liaison to the WHO Notify Library. We wish Jeff Szer and Ann Woolfrey all the best in take over from these three very experienced WMDA members. The year 2015. A year of challenges and changes. The Information Technology Working Group has recommended Confluence as a tool to be used for online collaboration. Our goal is to roll out Confluence for the WMDA committee members and active working group members in order to work efficiently online on new WMDA publications and recommendations. This will bring a new way of international collaboration, which will be crucial for the future. The Cord Blood Working Group, leaded by Sergio Querol and Merry Duffy, is collaborating with Netcord Foundation in order to get a clear picture on the worldwide cord blood inventory. This project is ambitious and will give each participating cord blood bank an opportunity to compare his data with the data of other cord blood banks. Another ambitious project will be started under the umbrella of the Quality and Regulation Working Group, leaded by Julia Pingel and Salmah Mahmood. The goal is to achieve a single survey that can be used by all registries in order to reduce the number of forms that are circulated to report compliance to regulation in a country. New is that WMDA member registries can fill in the WMDA annual questionnaire online. We hope to role out comprehensive statistics in our online statistics library in 2015. When you participate in the WMDA annual 4 WMDA Activities Report 2014
questionnaire you will get access to see the online statistics of your registry from 1997 till 2014. The database could be developed with the help of Histogenetics and Steiner software. More countries are joining the WMDA. In 2014 the NMDP hosted a wonderful workshop based on the WMDA handbook where the Indian registries participated. Four Indian registries are in the process to collaborate and to develop national guidelines based on WMDA standards and recommendations. We hope to meet the Indian colleagues at our future WMDA meetings: Bangalore, MDR India, Datri and Bharat Stem Cells. WMDA is moving forward and is working on different areas to improve the service to transplant centres, donors and patients. The current developments in our community look promising. New projects are initiated to define the costs to run a registry, to compare registry performance by benchmarking and to trace the donor from recruitment to donor follow up. Challenging projects that will work towards better services to transplant centres and patients. Therefore it is good to celebrate milestones as well. In 2015 the 25 millionth donor will be listed in the database Bone Marrow Donors Worldwide. We are looking forward to celebrate this with the WMDA members, transplant community and perhaps investors who might help to modernize BMDW to a state of the art system that can reduce the IT burden for the small and medium sized registries. Part of the celebration will be the launch of a very special book with true stories. Do not miss it! The book is the bridge between the history of the pioneers and the stories that inspire us in our daily work. We at WMDA office hope the information in this WMDA activities report is reading both attractive and informative. Should you wish to comment on the contents or if you have any suggestions for topics to be addressed in future editions, please do not hesitate to contact us at kruijf@wmda.info. Lydia Foeken Executive director PS is this your GRID? 5 WMDA Activities Report 2014
ACTIVITIES OF WMDA BOARD COMMITTEES ACCREDITATION STEERING COMMITTEE (ASC) and ACCREDITATION COMMITTEE (AC) Chair: Carolyn Hurley (United States) Members: Lydia Foeken (the Netherlands), Martin McGregor (United Kingdom, Wales), Pam Robinett (United States) and Nicoletta Sacchi (Italy). The Accreditation Committee celebrated the 10th year since the beginning of registry accreditation this year. Its mission 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. This year, four registries renewed their accreditation with an on site inspection: Australian BMDR, Czech National MDR, the Norwegian BMDR and Registre France Greffe de Moelle. In 2014, the Hadassah BMDR was awarded first time WMDA qualification. As of the end of 2014, there were a total of 21 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. Four applications were under review or approved for submission as of the end of 2014. WMDA Qualified/Accredited Registry Australian Bone Marrow Donor Registry Canada OneMatch Stem Cell and Marrow Network Cyprus Bone Marrow Donor Registry Czech National Marrow Donor Registry France Greffe de Moelle Registry Germany Zentrales Knochenmarkspender Register Deutschland Irish Unrelated Bone Marrow Donor Registry Israel Ezer Mizion Bone Marrow Donor Registry Israel Hadassah 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 United Kingdom British Bone Marrow Donor Registry United Kingdom Welsh Bone Marrow Donor Registry United States Gift of Life Foundation United States National Marrow Donor Program Day to day activities are coordinated by the Accreditation Steering Committee (ASC). The ASC also reviews any significant changes to qualified and accredited registries that have been submitted to the WMDA office according to WMDA Standard 1.05. 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 2014, these representatives included: Kyle Nelson (Information Technology WG, National Marrow Donor Program), Arun Prasath (Cord Blood WG; Singapore Cord Blood Bank), Beth Amer (Quality and Regulation WG, Canada One Match), 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 AC makes the final decision on qualification/ accreditation based on review team 6 WMDA Activities Report 2014
reports. The AC also reviews annual self evaluations from the qualified/accredited registries. It meets 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 collected information on barriers to registries unable to apply for qualification and documenting the benefits of accreditation. Approximately two thirds of the 43 non qualified registries responded. Although the majority agreed that WMDA qualification and subsequent accreditation was valuable, the biggest barrier was the need to create written documentation (policies/procedures/manuals) and to translate those documents into English. Lack of sufficient and qualified staff to coordinate the application was also cited as an issue. A presentation incorporating multiple speakers regarding the benefits of qualification/accreditation was incorporated into the 2014 Education Day agenda. The AC also revised its on site inspections to incorporate an auditing approach. Processes and checklists were developed during a practice audit of the Anthony Nolan Register in May 2014 and further refined through use in two on site inspections. Two workshops for reviewers were held, information documents for registries were revised and an education session for registries was held at the fall 2014 meeting. Australian BMD Registry Norwegian BMDR Czech National Marrow Donor Registry Registre France Greffe de Moelle 7 WMDA Activities Report 2014
Accreditation training in Paris, France (September 2014) France Greffe de Moelle (FGM) offered to facilitate an accreditation reviewer on site training. The participants started with a tour in the FGM registry building. The training was chaired by Pam Robinett. The main goal of this training was to incorporate an auditing approach in the inspection and the refinement of the development of processes and checklists. A PowerPoint presentation was shown on how to act (and react) during an on site inspection. The FGM registry staff was interviewed. The second day audit files were reviewed and the participants received very well organised computer training by FGM. We thank FGM for the excellent organisation and facilitation of this training and providing valuable feedback. Participating (from left to right) Joke van Gulden, Salmah Mahmood, Emilie Brondani, Daniela Orsini, Evelyne Marry, Betina Sørensen, Pam Robinett, Melanie Smith, Mats Bengtsson, Nuria Marieges and Federico Garnier. FINANCE COMMITTEE Chair: Rudolf Schwabe (Switzerland) Members: William Hwang (Singapore), Michael Boo (United States), Carlheinz Mueller (Germany), Claudia Rutt (Germany), Bruce Schmaltz (United States) and Lydia Foeken (the Netherlands). The Finance Committee had two meetings in 2014. Several models for the new membership fee were discussed and finally a fee, based on a flat fee plus the number of shipped products (bone marrow, apheresis and cord blood), was approved by the board. The membership was informed in August 2014. The budget for 2015, based on that new fee structure, was approved. In the budget funds is allocated for IT investments: customer relation management programme, implementation online collaboration tool and a SEAR/SPEAR reporting system. Furthermore, a new, clear definition of corporate membership, with a distinction to sponsor activities, was found. 8 WMDA Activities Report 2014
Plitvice, Croatia NOMINATING COMMITTEE Chair: Michael Boo (United States) Members: Luis da Silva Bouzas (Brazil), Etienne Baudoux (Belgium), Pawinee Kupatawintu (Thailand) and Terry Schlaphoff (South Africa). The nominating committee organised the nominations for the positions which are vacant on January 1, 2015. The following candidates were nominated and elected: Position Name Candidate Country President elect Carlheinz Mueller Germany Treasurer Rudolf Schwabe Switzerland Vice President Asia, Australia, Pacific Islands Jane Prior Singapore Chair Registries WG Irina Evseeva United Kingdom Chair Elect Registries WG Annette Rasche Germany Chair ITWG Matt Prestegaard United States Chair Elect ITWG Hans Peter Eberhard Germany 9 WMDA Activities Report 2014
Chair Elect Cord Blood WG Merry Duffy United States Chair Medical WG Jeff Szer Australia Chair Elect Medical WG Ann Woolfrey United States Secretary North and South America No candidates For two positions (president elect, chair Registries WG) a ballot was needed, which resulted into a majority vote for Carlheinz Mueller and Irina Evseeva. For the position of Secretary North and South America no nominations were received. It was decided to leave the position vacant. Because of a lack of nominees for the treasurer position, Rudolf Schwabe was asked to continue in that role for another two year term. S(P)EAR COMMITTEE Chair: Bronwen Shaw (United States) Members: William Hwang (Singapore), Matti Korhonen (Finland), Mirjam Fechter (Netherlands), Jeff Szer (Australia), Heidi Elmoazzen (Canada), Willis Navarro (till June 1, 2014, United States), Thilo Mengling (from November 1, 2014, Germany), Jerry Stein (from November 1, 2014, Israel), Lydia Foeken (Netherlands, non voting), Brian Lindberg (United States, non voting), Jeremy Chapman (Australia, non voting). The S(P)EAR reporting system is now very well established and registries actively participate. One hundred S(P)EAR were reported in 2014. The S(P)EAR committee met five times in 2014, twice at the WMDA meetings and three times by teleconference. Each of the S(P)EAR reported was individually reviewed by the SPEAR committee members and discussed if appropriate. If necessary the reporting registry was approached to add or clarify the information given. Feedback was given to the membership during the general membership meetings and the slides from those are openly accessible on the WMDA website. In two cases the S(P)EAR committee communicated immediately after a report was received, in one case due to a donor death and in the other due to a life threatening illness. These reports were reviewed in detail along with the reporting registry. In the case of the donor death this was found to be unrelated. The life threatening illness was definitely related, but the donor recovered. In 2014 the S(P)EAR committee updated the two SOPs related to the reporting process. Future plans: The committee is working with two registries following reports of the wrong donor cells being used. At least one manuscript is being prepared, with a possible second to follow. The committee is planning a manuscript describing an analysis of the S(P)EAR reports received by the WMDA. This will describe and report upon the trends of reporting over time, as well as exploring the imputability assignments over time. 10 WMDA Activities Report 2014
Atacama Chile STANDARDS COMMITTEE Chair: Nicoletta Sacchi (Italy) Members: Mats Bengtsson (Sweden), Merry Duffy (United States), Lydia Foeken (the Netherlands), Anita Koumouli (Cyprus), Simona Pollichieni (Italy) and Pam Robinett (United States). At the end of 2011 the WMDA Board established the Standards Committee that develops, reviews and revises the WMDA Standards to ensure consistency with WMDA recommendations and international regulations. Its mission is to coordinate the revision of WMDA Standards, according to an established three year cycle of implementation, in order to promote harmony between worldwide stem cell donor registries and cord blood banks and encourage uniformity of practices. To monitor the compliance of WMDA Standards with the sets of standards of other organizations working in the field of HSC transplant and therapy, the Standards Committee evaluated the consistency of the WMDA Standards with the next edition of JACIE standards and, within the Alliance for Harmonisation Cellular Therapy Accreditation (AHCTA). The Standards Committee also collaborated in the preparation of the crosswalk of comparison of cellular therapy Standards. The crosswalk is available on the AHCTA website: www.ahcta.org. The Standards Committee performed a check between WMDA and FACT Netcord Standards to verify which area are not covered by Netcord FACT and need to be additionally addressed when a FACT Netcord accredited cord blood bank is looking for WMDA qualification. In 2014 the Standards Committee has collected comments and request for changes from WMDA members. The Standards Committee decided to ask the WMDA working groups which request for changes they think appropriate to implement in the 2017 edition of the WMDA Standards. 11 WMDA Activities Report 2014
ACTIVITIES OF WORKING GROUPS AND PROJECT GROUPS CORD BLOOD WORKING GROUP Chair: Sergio Querol (Spain) Vice chair: Merry Duffy (United States). The Cord Blood Working Group is working according the mission: achieving safety, efficacy and availability of cord blood use through supporting, promoting and enhancing cord blood banking and transplantation. The Cord Blood Working Group met four times in 2014 (two teleconferences and two face to face meetings), which resulted in an action plan for 2015 2016 to work on. Support: Identification of Cord Blood Working Group stakeholders (who) Cord blood banks Registries Transplant centres Individuals: biomedical scientists, technical administrators, marketing and communication experts, finance experts Professional societies (e.g. Netcord Foundation, EBMT, JACIE, FACT, WBMT) 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: project groups and deliverables (how) Project group Observation: Members: Lydia Foeken (the Netherlands), Eliane Gluckman (France), Heidi Elmoazzen (Canada), Susan Gomes (United Kingdom), Shinichiro Okamoto (Japan) Surveillance: list of stakeholders, worldwide inventory, activity information and trends. Deliverable: Yearly survey on activity. Worldwide transplantation, analysis and outcomes: reports from Eurocord, CIBMTR and Japan. Deliverable: Yearly update from Eurocord and Japanese cord blood banking activities. Serious Adverse Events: Analysing reported serious adverse events related to cord blood and updating the community; proposal of actions to prevent or correct recurrence. Deliverable: Trial of a new shipping box for cryo shippers Project group Harmonization: Members: Arun Prasath (Singapore), Sergio Querol (Spain), Susana Gomez (United Kingdom), Etienne Baudoux (Belgium), Merry Duffy (United States) Quality: maintaining tools to compare quality (cord blood banks assessment audit; prescription information of cord blood banks; comparison of the different licensing and accreditation schemes available worldwide. 12 WMDA Activities Report 2014
Pending Deliverable: WMDA standards for cord blood and comparative table of worldwide accreditation and licensing schemes Exchange (S. Querol): 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. Pending Deliverable: New communication algorithm between transplant centres Deliverable: New communication algorithm between transplant centres and banks, registries and transplant centres; vice versa. Cord blood donor suitability criteria: Worldwide consensus in eligibility criteria and donation models in public cord blood banking. Pending Deliverable: Worldwide consensus in CB donor eligibility criteria (wiki access) Banking operations: link between WMDA Cord Blood Working Group and NetCord Foundation. Presentation and discussion of the best technology for cord blood processing, testing, storage and distribution. Pending Deliverable: Technological survey on current cord blood banking procedures and quality evaluation of the BMDW available inventory Project group Guidance: Members: Michael Boo (United States), Jacqueline van Beckhoven (the Netherlands) Sustainability: Discussion on organizational models, networking and pricing. Pending Deliverable: WMDA recommendation for CB unit pricing Dissemination: Summary of deliverables generated from each work package; update of CB chapter in WMDA book; update White Paper previously published in BMT (2010) Pending Deliverable: Cord blood working group White paper for 2014 or 2015. 13 WMDA Activities Report 2014 Kruger National Park, South Africa
INFORMATION TECHNOLOGY WORKING GROUP Chair: Martin Maiers (United States) Vice Chair: Jack Bakker till July 1, 2014 (the Netherlands). 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 has collaborated with ICCBBA (International Council for Consistency in Blood Banking Automation) to develop a standard that specifies the allocation rules, format and use of a Global Registration Identifier for Donors (GRID). Based on feedback from the WMDA Board and IT and QA working groups the implementation of GRID has been organised into 5 phases: 1. Registration identifier allocation rules, GRID format, GRID eye readable presentation, and GRID data structure for electronic transfer are defined. Guidance for registries for mapping local identifiers to the GRID are developed. 2. The European Marrow Donor Information System (EMDIS) and Bone Marrow Donors Worldwide (BMDW) databases and messaging standards support GRID. Use of GRID in communication between registries is recommended but not required. 3. GRID is a mandatory field in communication with EMDIS and BMDW databases and in communication between registries. GRID is used as the key donor identifier on search reports. GRID is used on product labels when a donor identifier is required. 4. GRID is incorporated into all Registry database systems as the key identifier for the donor. This is done in a manner that allows any GRID to be used as the key identifier (not only those GRIDs assigned by the Registry) 5. GRID for life is introduced and donors transferring between registries retain the GRID they have previously been assigned. The main tasks of Phase 1 are complete and the focus going forward will be on phases 2 5. Security and Infrastructure The Confluence website (https://collaboration.wmda.info/) is live. Two Working groups have piloted using it as well as the EMDIS committees. It will be expanded to meet the collaboration needs of all WMDA working groups and committees. 14 WMDA Activities Report 2014
This includes the following functionality: Document Collaboration and File Management Discussion Boards Calendar Project Management Tasks and Workflows Email notifications Rich Content Search Mobile Support Koh Rong Cambodia 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 has been expanded to 6 registries. Other developments with EMDIS: Lithuania (LT), NetCord (NC), Poltransplant (PL) and Greece (GR) were added There are now 37 members of the EMDIS network providing access to 90% of the available via and 66% of the CBU in BMDW. 15 WMDA Activities Report 2014
BMDW Bone Marrow Donors Worldwide has now grown to include 93 organizations. New features include: Remote match access via Web service NIMA Match: 2 mismatches/1 NIMA match Remove split MM donors from regular 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 [1]. A new electronic (XML) format for the HLA allele sequences was developed [2] which implements a minimal information standard for reporting NGS results (MIRING) [3]. The rules for a web service to fully automate the creation and lookup process for Multiple Allele Codes has been completed and is currently in implementation. Matching Algorithm Standards & Validation In the past year this working group has focused on validating results of predicted algorithms. Preliminary results from 5 algorithms (Steiner Ltd., ZKRD, DKMS, Anthony Nolan and NMDP) showed a very high degree of agreement. Reasons for all discrepancies have been identified which included performance heuristics (trimming), experimental implementation errors and bugs. Re calculation of results and re comparison is underway with the goal to deliver a reference matching dataset and results with to goal of making this a part of registry accreditation. Registry Genetic Diversity This project has the goal to validate bioinformatics methods and tools for HLA haplotype frequency analysis specifically addressing unique issues of hematopoietic stem cell registry data sets. Most of the world s donors are typed at a lower resolution and/or with fewer loci than clinical decision making requires. As clinical factors involved in transplant evolve and expand this will continue to be the case. This, combined with the need to present a unified global view means that haplotype frequencies are no longer a local concern. As a consequence, this groups aims to standardize haplotype frequency data, and provide shared resources for the community This group has redesigned a validation experiment for EM implementations based on simulating registries and participants are generating results for comparison. References 1. 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. 2. http://dx.doi.org/10.1101/014951 3. http://dx.doi.org/10.1101/015230 16 WMDA Activities Report 2014
MEDICAL WORKING GROUP Chairs: Bronwen Shaw (United States, till June 30, 2014), Jeff Szer (Australia, from July 1, 2014) Vice chairs: Anne Marie van Walraven (the Netherlands), Grazia Nicoloso (Switzerland). The Medical Working Group met twice in 2014, in London (at the IDRC) and in Minneapolis in November. Find below an overview of the projects that were reported during these meetings. Donor Medical Suitability Committee Chairs: Robert Lown, United Kingdom and Hung Yang, Australia Members: Rachel Pawson (United Kingdom), Mats Bengtsson (Sweden), Mirjam Fechter (the Netherlands), Bronwen Shaw (United States), Jerry Stein (Israel), Thilo Mengling (Germany), Pavel Jindra (Czech Republic), CK Lee (Hong Kong China). The committee continues its work to harmonise the international donor suitability criteria from different registries and present consensus criteria from the WMDA. The primary tool for disseminating this guidance is a wiki based website, which now boasts an impressive 160,000 hits since its set up in 2013. The group has continued to work this year to expand the existing guidance, and the meeting in Minneapolis provided a useful forum to discuss urgent new guidance for viral haemorrhagic fever, as well guidance on herpes virus infections, amongst others. Publication: Lown RN, Philippe J, Navarro W, van Walraven SM, Philips Johnson L, Fechter M, Pawson R, Bengtsson M, Beksac M, Field S, Yang H, Shaw BE. Unrelated adult stem cell donor medical suitability: recommendations from the World Marrow Donor Association Clinical Working Group Committee. Bone Marrow Transplant. 2014 Jul; 49(7):880 6. The website can be accessed via the WMDA homepage (under professionals, tools) at: https://wiki.wmda.info/index.php?title=main_page Future plans: Continue to expand guidance, including new guidance on deferral of men who have sex with men (MSM). Clarify guidance on use of Central Venous Catheter (CVC), particularly in the context of overweight donors 17 WMDA Activities Report 2014 Perito Moreno Argentina
Project group: WMDA statement about safety of GCSF Members: William Hwang (Singapore), Dennis Confer (United States), Bronwen Shaw (United States), Michael Pulsipher (United States) The project group has submitted a manuscript, which reviews the evidence on which the WMDA GCSF statement is based. This has been accepted for publication in scientific journal Bone Marrow Transplantation. This project group has completed all its projects and will be discontinued. Publication: Bronwen E Shaw, Dennis L Confer, William Hwang, Michael A Pulsipher. A review of the genetic and long term effects of GCSF injections in healthy donors: a reassuring lack of evidence for the development of haematological malignancies. Bone Marrow Transplantation 50, 334 340 Project group: Related donor care and management Members: Bronwen Shaw (United States), Chloe Anthias (United Kingdom), Anne Marie van Walraven (the Netherlands), Mirjam Fechter (the Netherlands), Betina Sørensen (Denmark), Mary McCormick (United States), Grazia Nicoloso (Switzerland), Tigran Torosian (Poland). The project group has produced a manuscript outlining the issues discussed at the EBMT congress in 2013 during the joint EBMT/WMDA session: Should the care of related donors be performed by unrelated donor registries, and describing current national models where registries perform part of the donor care pathway. Publication: Chloe Anthias, Suzanna M Can Walraven, Betina S Sørensen, Grazia Nicoloso de Faveri, Mirjam Fechter, Jacqueline Cornish, Andrea Bacigalupo, Carlheinz Muller, Michael Boo, Bronwen E Shaw. Related hematopoietic cell donor care: Is there a role for unrelated donor registries? Bone Marrow Transplantation (2015) 50, 637 641 Future plans: The subgroup is planning to produce guidance for assessment of related donor health pre HLA typing. Vang Vieng Laos 18 WMDA Activities Report 2014
QUALITY and REGULATION WORKING GROUP Chair: Julia Pingel (Germany) Chair elect: Salmah Mahmood (United Kingdom). The Quality and Regulation Working Group looks back on a very active year 2014. Strong interest in quality and regulation topics during the London meeting led to the introduction of a second working group session during the WMDA fall meeting. While the closed session was attended by active working group members to discuss and advance their projects, the open session was intentionally more educational with presentations on topics suggested by working group members: audit of donor centres (presenters: Annette Rasche (Germany), Nicoletta Sacchi (Italy), Ann Kemp (United States)) and risk management (presenters: Salmah Mahmood (United Kingdom), Mary Laughlin (United States) and Nira Shriki (Israel). The Quality and Regulation Group also organised a seminar on document control, supported by Gael, where some registries showed cases how to implement document control in a registry. Project group: Quality Manual The major achievement of the Quality and Regulation Working Group in 2014 surely is the finalization of the Quality Manual by Bette Bream (United States), Annegret Werzner (Germany), Jennifer Philippe (Canada), Katy Latham (United Kingdom), Sigal Manor (Israel), Nira Shriki (Israel), Michelle Setterholm (United States), Jason Dehn (United States) and Julia Pingel (Germany). Indispensable in advanced quality management, this document provides a template for registries to set up their own quality manual. Topics covered are: general organization information; personnel; work environment, equipment and safety; key processes; documents and records management; problem management; suppliers and services management; information management as well as the necessary steps of monitoring and revision of the quality manual itself. The manual will be available for download on the WMDA website. In collaboration with authors of the registry handbook, a brief summary will be added therein. Project group: HLA Discrepancy Report The HLA discrepancy questionnaire has been changed and further optimized in 2013/2014. The new format will be first applied to the 2014 HLA discrepancy report. Detailed descriptions how to fill in the questionnaire are available and Marney Milsten (United States) will be glad to give advice. Project Group: Audits of apheresis and collection centres Several conference calls and two in person meeting have been held by the subcommittee audit of apheresis and collection centres. A first draft has been developed, covering the following sections: donor management standards, donor safety standards and product quality standards. The subcommittee will continue the draft and will closely collaborate with the accreditation committee to come up with useful guidelines and tool for audits of apheresis and collection centres. Project group: Validation of transport boxes The project group validation of transport boxes has held one conference call and one in person meeting in which the scope of the project has been fixed and essential topics have been discussed. With additional active members recruited who volunteered at the fall meeting, the project group now is collecting information about existing programs from registries and is headed for starting a draft manuscript. 19 WMDA Activities Report 2014
Salar Uyuni Bolivia Project group: Global Registry Identifier for Donors The Quality and Regulation Working Group strongly supports the implementation of a unique global donor ID in collaboration with International Council for Commonality in Blood Bank Automation (ICCBBA). The implementation of a Global Registry Identifier for Donors (GRID) will be a huge step forward, ensuring that a donor ID is unique a prerequisite to eliminate a fatal source of error and confusion due to the current system with different numbers for one donor or the existence of identical donor numbers in different countries. One initial conference call on this topic was followed by the ITWG session during the fall meeting. Project group: WMDA Product Collection and Import Information Survey The WMDA Product Collection and Import Information Survey has been developed by the former Regulations and Legal Affairs Committee in order to create one single questionnaire covering all essential information registries need to collect before collaborating with new registries; especially when these registries are not WMDA qualified or accredited. A project group is now revising the survey and will work towards completion of the survey by WMDA registry members not yet providing the information. This survey is intended to substitute surveys that are sent out by individual registries for the same purpose. Project group: Donor Center Audits Finally, the Quality and Regulation Working Group has resumed the former project to create guidelines for donor centre audits. A first draft was created in 2010 and will be used as starting point to complete this project. Interested members are welcome to participate in this project group. Get Involved! Quality is not a paper to compose and place in the drawer. Instead, quality is what we strive for every day to provide excellent hematopoietic progenitor cell products for our patients. So, if you feel that there are guidelines, surveys or tools related to quality and regulation that you develop and that could be interesting for the community, or if you are interested in participating in one of the above mentioned projects, please contact Julia (pingel@dkms.de) or Salmah (salmah.mahmood@anthonynolan.org). 20 WMDA Activities Report 2014
REGISTRIES WORKING GROUP Chair: Thomas Bart (Switzerland) Vice chairs: Irina Evseeva (United Kingdom) and Jung Hwa Nah (Korea). Project group: WMDA handbook Gift for Life In 2014 the WMDA issued the Spanish version on the WMDA handbook, we also updated and made corrections to the 1 st version of the handbook and we will continue on an annual basis of making corrections and updates. We defined former as well as new colleagues to take responsibility for single chapters as well as the entire handbook to keep this an on going project. As a group we discussed the thought of creating an electronic version of the book, along with adding information on quality to the handbook. Forms Committee Chaired by Thomas Wiegand, the forms committee continues to maintain, refine and launch forms that manage the overall search process. Based on the number of comments received from international partners, it is apparent that the WMDA forms have truly become the recognized international standard for the entire search process. In addition to the updates, both in content as well as functionality, made in 2014 to the existing forms, four new forms have been requested by the WMDA community. Form owners are working to develop draft versions of the new forms for release in 2015. Two of the new forms being developed are a change control form and a quality review checklist. In an effort to ensure that released forms are of the highest quality possible, form owners will be documenting all updates and enhancements made with each version. The checklist will be used to document the quality control testing performed for each form. The change control data per form will be made available to the WMDA community to allow proper local implementation of new forms versions. Project group: Search Coordinator Certificate Programme During 2014 the project group led by Irina Evseeva (United Kingdom) and Annette Rasche (Germany), run a few telephone conferences to work out the syllabus of 9 modules for the basic level program. Speakers and experts were invited to create a lecture, accompanying hand out, test questions and a glossary for each module. The online E learning platform Moodle was chosen to host the materials, so students can access it from all over the world in time convenient for them. During WMDA Spring Meeting in London a summary of the syllabus and program structure were presented to the WMDA board and the approval to start a pilot in October 2014 was obtained. Experts became busy to create the materials, 16 students were chosen from different registries with different academic background and different experience in search coordination. The WMDA office involved Anne Marie van Walraven for support, the Moodle platform was set up in the Netherlands and on October 16 th 2014 the pilot was launched with the generous support of Novartis. During Fall Meeting 2014 the project group agreed on launching the formal program for basic level in October 2015 and starting a pilot for advanced level at the same time. The project group has started work on the Advanced Level syllabus, which will be presented for the WMDA board approval at the Spring Meeting 2015. Meanwhile all 16 students have passed the test of module 1 and are enrolled in the second module. Third module will be accessible in the last week of December 2014. We like to thank the project group, all experts, the WMDA office, the students and last but not least the IT people helping in the background for their support. Without them this project would not have grown so fast! 21 WMDA Activities Report 2014
WMDA Education Day 2014: Incorporating Quality in the work of Registries Chair: Irina Evseeva Members: Pam Robinett (United States), Grazia Nicoloso (Switzerland), Meral Beksac (Turkey), Laurie Olesen (United States), Annette Rasche (Germany), Thomas Wiegand (United States), Lydia Foeken and Dorien de Kruijf (WMDA office). The WMDA Education Day Committee consisting of several members from different registries had a few teleconferences and a face to face meeting to discuss the ideas, feedback from the previous events, sponsors suggestions and needs, and came up with the program Incorporating Quality in the Work of Registries for the 2014 Education Day at the Fall meeting in Minneapolis. The call for abstract was sent out, and the separate teleconference took place to discuss abstracts and select the best ones for oral presentation. We have also sent out the call for unusual situations related to stem cells shipment, and were glad to receive a lot of stories. The program consisted of three sessions where members from different registries shared their experience in preparing for WMDA accreditation. Carolyn Hurley gave a wonderful overview of the steps taken in the last decade. Three registries presented their experience to prepare for WMDA qualification, WMDA accreditation and an onsite inspection. Michael Punzel, Cellex Germany, discussed quality issues of hematopoietic stem cell collection. Annette Rasche and Elizabeth King spoke about challenges in product transport. Some difficult and funny shipment related situations were used in running an interactive quiz, and the oral presentations of the best abstract well received. The feedback from attendees was very positive, and this is thanks to all those involved in preparation, presenting orals and posters, and our special gratitude goes to WMDA office and NMDP colleagues who helped a lot with IT and administration. During the lunch there was a possibility to review the many posters submitted and to talk with the poster authors. OnTime Couriers took care for the poster boards, which created a wonderful opportunity to meet with the poster authors. We have already received the whole list of new ideas for the next Education Days, and several new members have volunteered to be involved, full of fresh ideas and good will to prepare even better 2015 Education Day. 22 WMDA Activities Report 2014 Manaslu trek Nepal
Project Group: The Cost of a Cure what is the real economic value of a haematopoietic stem cell registry? The project group led by Tim Fox (United Kingdom) and Amy Ronneberg (United States), was created on November 7th 2014 with the support of the WMDA office. The research project is aiming to answer and quantify the following question: Can the value that a WMDA member provides to its own community or other communities be quantified in a way that establishes an indispensable value above and beyond a crude assessment based on the price it charges for the provision of services and products? This project will with the support of the WMDA membership: 1. Provide the community with a current and forecast view on transplant and funder financial plans, cost pressures and pricing which may then inform strategies, financial and operational plans. 2. With increasing pressure on price, and unhelpful price to price comparison, funding restrictions, the data and information collected will provide report findings that can be used to supplement and quantify existing understanding with aims such as: Countering the price to price comparison misunderstanding from transplant centres, funders, insurers, researchers; To build a model that quantifies (where possible) the value that a registry model delivers and offers to different communities, i.e. there is more to a registry model than a price list? Establishing through the different registry models reasons for price differentiation and cost allocation; Establishing finally that no registry model or WMDA member is the same! 3. Provide efficiency and cost saving opportunities supported by evolving benchmarks. 4. Contribute to wider strategic discussions around pricing, costs and collaboration. This research aims to quantify what is happening around the world, and how as a community we can work together to ensure that patients and patient services receive the same level, if not more investment. The Project is being planned to have three phases. The Project Group has started to work on Phase 1 Report on the economy in relation to international registry finance, which is aimed to be completed by March 2015. Within the Donor Registries Working Group two groups of registries are working together to set up discussions and exchange knowledge for their region. The first group is the GEMS group (European Registries) and the second group is the Asian Group. They meet during the WMDA meetings to share experience, find below a summary of the activities. Group European Medium Sized Registries (GEMS) Chair: Torstein Egeland (Norway). The Group of European Medium Sized Registries (GEMS) was established in the fall of 2011 in Oslo, because European medium sized registries (approx. 20,000 100,000 ABDR typed donors) realized they were facing several common challenges (recruitment, donor pool profile, HLA typing, IT issues etc.). GEMS is a group within WMDA, and minutes from GEMS meetings and other relevant GEMS documents are posted on the WMDA home pages after approval. The GEMS group held two scheduled meetings in conjunction with the 2014 WMDA meetings (May 14, London, UK and Nov. 5, Minneapolis, USA). GEMS Recent and Current Issues 23 WMDA Activities Report 2014
GEMS Mission, Vision, House Rules, Membership and Chairpersonship During the GEMS Meeting on November 5, a document outlining GEMS Mission, Vision and House Rules was approved. In addition, the document sets the terms for GEMS Regular and Associate Membership as well as the Chair. The mission includes the follow: To have a voice and promote sustainability of GEMS member registries; To address problems and challenges common to GEMS registries and to develop solutions that are suitable for registries of this type and size; To fulfil democracy, reciprocity, solidarity in care for national patients; To have a constructive common voice in developing international collaboration for the benefit of the patients worldwide; To maintain GEMS members as active partners in the international collaboration of unrelated stem cell donor registries; GEMS IT solutions GEMS is working on a proxy solution for a hub that can handle EMDIS communications for members more efficiently. Since many GEMS registries use particular software (Prometheus), GEMS is also working on establishing a Prometheus User Group. HLA typing of newly recruited members GEMS members registries are invited to participate in a tender for a new agreement for up front HLA typing of newly recruited donors. Other issues Some issues are annual features, e.g. benchmark analyses and comparison of member registries, with the intention that less experienced registries can learn from more experienced registries. Also, GEMS is working on a project to set up a Medical Advisory Committee and an Advisory Committee for WMDA Accreditation Application for GEMS Members to utilize, if needed. ASIAN REGISTRIES 24 WMDA Activities Report 2014 Munduk Indonesia
Chair: Edward Yang (Taiwan). The Asian Registries organised two meetings in 2014. The first meeting resulted in a survey, which was sent out to all registries worldwide. From each registry is registered who to contact in that particular country in case of a sibling typing. Also a form was developed which can be used for the request. At both meetings the Asian registries presented their activities. At the 2014 WMDA fall meeting, Minneapolis, USA in November 2014, the Asian Registries held its Asian Registries Meeting on Nov. 6, 2014. A Registries Report Session was presented to a group participant from several countries. Edward Yang, Tzu Chi Stem Cells Center, Shinichiro Okamoto, JMDP and Junghwa Nah, KMDP delivered update reports for their Registries. The Registries Working Group is deeply thankful to Dr Thomas Bart (Switzerland) who was a Chair of the Working Group from 2011 till 2014 for his thoughtful and friendly leadership. Another thank you is for Thomas Wiegand who has overseeing the WMDA forms for many years. Koh Lading Thailand 25 WMDA Activities Report 2014
MEMBERSHIP NEWS New WMDA Registry members The following registries applied for WMDA organizational membership and were approved by the WMDA board: Rosplasma Russia, Loginova Maria Hellenic Cord Blood Bank, Andreas Papassavas Chile Cord Blood Bank, Francisco Barriga Iranian Stem Cell Donor Program, Amir Ali Hamidieh Beijing Cord Blood Bank, Xiaofei Wei. Rehousing The Austrian Registry moved. Their contact details are now: Austrian Bone Marrow Donor Registry Stubenring 6, 1010 Vienna, Austria E mail: austrianregistry@goeg.at Primary contact: Birgit Priebe. Retirements Ann Green (United Kingdom) served as chair of the Donor Registries Working Group from 01 07 2008 until 01 07 2011. After finishing her term she stayed involved in the development of the WMDA handbook. She was chapter leader of the chapter Information Technology, which was quite challenging for a non IT person. She was able to manage to describe each step where you need to think about if you start a registry and would like to perform international searches. Ann was also involved in the development of the accreditation programme. She assisted in the development of the audit approach which is now implemented. Her experience from as well the blood bank side as the registry side made her a very valuable reviewer. She retired from the Bristol Registry on December 31, 2014. Introduction Ann Woolfrey; chair elect Medical WG as of 01 01 2015 I have been the Medical Director of the Unrelated Donor (URD) Program at the Seattle Cancer Care Alliance/Fred Hutchinson Cancer Research Center since 2004. The URD program is one of the largest in the world, facilitating identification of donors for approximately 160 patients per year. The URD program plays an important role in linking patient care to innovative research efforts, including the programs in umbilical cord blood transplantation, nonmyeloablative HCT, and radiolabeled antibody therapies. In addition to this effort, I collaborate with laboratory investigators to translate novel technologies into clinical trials, and collaborate extensively with outside investigators in multi centre pilot studies and retrospective analyses of registry data. I am the principal investigator of a number of clinical trials that investigate cellular therapies for treatment of non malignant diseases, including autoimmune diseases and HIV. 26 WMDA Activities Report 2014
New leader CMDP Ms. GAO Dongying, the acting director of China Marrow Donor Program (CMDP), joined the CMDP in January 2014. She has worked in blood transfusion service for 20 years since 1992, and she has a lot of experience on blood testing laboratory, quality management, operations management, blood donor recruitment and social marketing. Now she is still the member of National Blood Standard Committee of MOH, and Blood Donation Promotion Committee of Chinese Society of blood Transfusion. Her research specialty is social marketing management. The National Standard Whole blood and component donor selection requirement she has drafted was implemented in July 1st, 2012. Korea Marrow Donor Programme, 20 th anniversary On August 29 30, 2014, the KMDP Registry held its 20 th anniversary by organising a symposium: the 20 th Anniversary Symposium of KMDP. KMDP hosted the Symposium at Haeundae Grand Hotel, Busan, Korea. William Hwang, WMDA, John Miller, NMDP, Shinichiro Okamoto, JMDP, Qi Liu, CMDP and Edward K. L. Yang, Tzu Chi Stem Cells Center, Taiwan were invited, participated and delivered talks on various topics at the Symposium. William Hwang presented the data of WMDA about "Donor Safety: Case studies and update of WMDA". It was very impressive to consider about the donor's safety in our society. Japan Marrow Donor Program (JMDP) will list cord blood units in BMDW Soon, JMDP will list roughly 13,000 cord blood units in addition to the 448,978 donors listed already in BMDW. After the implementation of the Act for Appropriate Provision of Hematopoietic Stem Cells to be Used in Transplantations in Japan in January 2014, some Cord Blood Banks stopped their operation or merged to the other Cord Blood Banks. In this transition, a part of the cord blood units are temporally removed. Also the policy of opening to the public has been changed and only cord blood units with adequate cell numbers are currently listed. JMDP is now in the process to prepare the infrastructure for shipping cord blood units outside Japan. 27 WMDA Activities Report 2014
IN MEMORIAM Peter Heard, quality manager Bristol Registry Peter Heard was very active in the WMDA Donor Registries Working Group, where he worked on documents to outline the key responsibilities of staff members in a registry. The documents outlined perfectly the responsibilities of a director, medical director and medical advisory panel. He had a though time in finalising the document, because each registry had its own opinion how and what type of work a director needs to do. Later Peter Heard submitted the WMDA annual questionnaire. He was the person collecting all the data for the WMDA annual questionnaire and gave very good feedback on how to improve the wording of the questionnaire. Hiltrud Morsch, co founder Stefan Morsch Foundation, Germany Our dear friend and colleague Hiltrud Morsch, co founder of the Stefan Morsch Foundation in Birkenfeld (Germany), passed away aged 67 on November 28th, 2014 after a brief but severe illness. Her sudden death was a dramatic loss not only for her family and the staff of the foundation but for all the blood stem cell transplant community. Her son Stefan had received an unrelated bone marrow transplant in Seattle in 1983 but sadly passed away a few months later. With the money collected for the treatment Hiltrud and her husband Emil Morsch created the Stefan Morsch Foundation, the first German organization specifically supporting patients in need of a blood stem cell transplantation and also initiated the first donor center in Germany. Her colleagues in Ulm gratefully remember the support by this foundation in the late 1980s for the difficult efforts to set up a national donor registry eventually leading to the creation of ZKRD in 1992. In the following decades, Hiltrud Morsch was the nationally and internationally visible representative of one of ZKRD s most important collaboration partners and substantially contributed to the development of our field, in particular in the committee responsible for the German Standards for Unrelated Blood Stem Cell Donation and as a member of several WMDA working groups and initiatives. Her efforts were acknowledged in 2001, when she was decorated with the Rhineland Palatinate Order of Merit. Two years ago Hiltrud Morsch officially retired, but as a matter of fact she never really retired. She continued working in the Donor Centre and in the Board of Trustees of the foundation and she always was there for her staff and colleagues and over and over again for the patients and their relatives We have lost a very dear and competent colleague and friend whom we will always remember in gratitude and respect. Her dedication, her courage, her hope and her strength will always be an inspiring example for our community. 28 WMDA Activities Report 2014
PROJECTS DONE BY THE WMDA OFFICE The WMDA office is the central point for all activities of the WMDA. In 2014 six persons were working for the WMDA: Lydia Foeken, executive director Monique Jöris (from July 1 till September 30) project researcher (WMDA annual report) Paulien Kort (student, from October 15 till December 31) Dorien de Kruijf, communication and events coordinator Daniela Orsini (from January 1 till October 31), accreditation and projects coordinator Anne Marie van Walraven (volunteer to assist with the development of Search Coordination Certificate Programme) In 2014 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 2014: Board: Implemented the goals described in the strategic plan of the WMDA Implemented the new WMDA fee schedule including informing the WMDA members Developed a programme for corporate members Published the WMDA Financial/Activities Report 2013 Assisted with the WBMT article: One Million Transplants (http://www.thelancet.com/journals/lanhae/article/piis2352 3026(15)00028 9/abstract) Established a memorandum of understanding with ICCBBA Participated in developing business plan for BMDW 2.0 Board committees: Participated in and assisted the Accreditation Steering Committee and Standards Committee Participated in and assisted the Finance Committee Participated in and assisted the IDRC committee Participated in and assisted the S(P)EAR Committee Facilitated Nomination procedure Collected comments for the improvement of the WMDA standards Attended the inspection training day in Paris (September 10 11) Attended the pilot inspection at the Anthony Nolan (May 13) Revised Accreditation Documentation and Onsite Inspection Checklists PR: Initiated and supervised the development and implementation of the new WMDA logo, website and house style Coordinated the collection and editing of the stories of the second WMDA book: Sharing Life September 2: visited DKMS Cologne to learn more about the possibilities to work towards a Global Awareness Day for HPC donors Started up brainstorm about the celebration of the listing of 25 million donors (planned February 2015) Worked together with EBMT on the programme of the joined session at the 2015 EBMT meeting 29 WMDA Activities Report 2014
Publications: A Gratwohl, M Pasquini, M Aljurf, Y Atsuta, H Baldomero, L Foeken, M Gratwohl, LF Bouzas, D Confer, K Frauendorfer, E Gluckman, H Greinix, M Horowitz, M Iida, J Lipton, A Madrigal, M. Mohty, L Noel, N Novitzky, J Nunez, M Oudshoorn, J Passweg, J van Rood, J Szer, K Blume, FR Appelbaum, Y Kodera, D Niederwieser Hematopoietic stem cells: lessons from the journey to one million transplants http://dx.doi.org/10.1016/s2352 3026(15)00028 9 W Hwang, L Foeken Blood Stem Cell Donation, A model for Worldwide Cooperation in Transplantation Singapore Annual 43, 294 295 Cord Blood Stem Cells: International Development and Import/Export WMDA (e book ISBN: 9780124078369). See for more details: http://store.elsevier.com/cord Blood Stem Cells Medicine/isbn 9780124078369/ Langkawi Malaysia WMDA meetings and IDRC: Coordinated the programme for WMDA Spring Meeting 2014 in London, UK in collaboration with the colleagues of the Anthony Nolan Coordinated the programme for WMDA Fall Meeting 2014 in Minneapolis, MN, USA in collaboration with Tia Houseman, NMDP Assisted in the organisation of the WMDA Education Day (abstracts, programme, poster session) Arranged meeting location for 2015 Istanbul meeting 30 WMDA Activities Report 2014
Evaluated the bids for the IDRC 2016 Representation: March 30: Netcord Board Meeting March 30 April 2: EBMT Meeting Milano May 6: EU meeting Brussels together with Ingrid Tistl (ZKRD, Germany), Salmah Mahmood (Anthony Nolan, United Kingdom) May 26: Arthiqs Meeting Paris September 15 16: WHO Consultation on MPHO in Geneva November 7 8: NMDP Council Meeting (Lecture: Globalization of Stem Cell Transplant) November 10 12: Emerging Seminar for Indian Registries November 19: Dutch Bio vigilance Conference, Den Haag December 16: Arthiqs Meeting Stockholm WMDA working groups and EMDIS: Updated the WMDA forms in collaboration with Marney Allen (United States) Collected the HLA discrepancy questionnaires 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) Transferred the content of the WMDA handbook in Confluence for future digital publishing Coordinated the Spanish translation and the distribution 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 Updated registries holiday calendar Updated the registries emergency contact list Assisted in the development of an online questionnaire for Cord Blood Banks Collaborated in the development of the Search Coordinator Certificate Programme Assisted with the EMDIS Education Programme (certificates, exams) Specifica on of WMDA Office Hours 2014 185 496 319 560 Accredita on Annual Reports Board 860 341 E mail contact Europdonor Finance 451 885 Mee ngs Office PR 757 273 425 SEAR Working Groups 31 WMDA Activities Report 2014
FINANCIAL STATEMENT Statement of Financial Position As of December 31, 2014 In Euro 2014 2013 Assets 792,268 639,378 Current assets 792,268 639,378 Debtors 5,751 253 Other receivables 48,636 2,283 Cash 737,881 636,842 Liabilities 792,268 639,378 Association equity 563,382 414,172 Remaining reserves 365,833 356,218 Reserves for special purposes 141,015 11,300 Reserves for accreditation 56,534 46,654 Short term liabilities 228,886 225,206 Accounts payable 4,156 0 Accruals 224,730 225,206 32 WMDA Activities Report 2014
STATEMENT OF REVENUE AND EXPENDITURE 2014 2013 Operating revenues 432,309 315,761 Contributions 239,210 204,621 Contributions 67,750 50,000 Accreditation 32,000 32,000 WMDA Handbook 15,631 29,140 Meeting 77,718 Expenses 291,433 292,553 Staff costs 165,481 179,603 Office costs 41,139 36,633 Accreditation costs 22,120 22,994 Travelling costs 8,491 10,576 Meeting expenses 6,553 16,128 Other costs 47,649 26,619 Operating result 140,876 23,208 Received interest 8,334 9,405 Result 149,210 32,613 33 WMDA Activities Report 2014 Banff National Park Canada
B WMDA BOARD & OFFICERS 2014 Executive Committee: William Hwang, MD, President Michael Boo, JD, President elect Machteld Oudshoorn, PhD, Secretary General Rudolf Schwabe, PhD, Treasurer Board Officers: Eliane Gluckman, MD PhD, Past President Edward Yang, MSc, Vice president Asia, Australia and Pacific Islands Evelyne Marry, MD, Vice president Europe and Africa Mary Laughlin, 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 Medical WG until 30 06 2014 Jeff Szer, interim Chair Medical WG as of 30 06 2014 Thomas Bart, MD, Chair Donor Registries WG Martin Maiers, MS, Chair Information Technology WG Julia Pingel, PhD, Chair Quality and Regulation WG Sergio Querol, MD, PhD, Chair Cord Blood WG Jon van Rood, MD, PhD, President Emeritus COLOPHON Publisher: 2015 WMDA Photos by Monique Jöris and Dorien de Kruijf 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 Inle Lake Myanmar 34 WMDA Activities Report 2014