Worldwide Network for Blood and Marrow Transplantation (WBMT) Progress Report January-December 2014 www.wbmt.org Headquarters: Laupenstrasse 37, Postfach 7951, CH 3001 Bern, Switzerland WBMT Annual Progress Report TABLE OF CONTENTS 1.0 INTRODUCTION ........................................................................................................................ 1 1.1 Early Development ............................................................................................................... 1 1.2 Working Relationship with the World Health Organization (WHO) .................................... 1 2.0 COMMITTEE STRUCTURE ......................................................................................................... 3 2.1 Board .................................................................................................................................... 3 2.2 Executive Committee ........................................................................................................... 3 2.3 Standing Committees ........................................................................................................... 3 3.0 STANDING COMMITTEE ANNUAL REPORTS AND 2014 ACCOMPLISHMENTS ......................... 5 3.1 Donor Issues Committee...................................................................................................... 5 3.2 Education and Dissemination Committee ........................................................................... 6 3.3 Graft Processing Committee ................................................................................................ 7 3.4 Transplant Center/Recipient Committee............................................................................. 8 3.5 Regulation and Accreditation Committee* (AHCTA) ........................................................... 9 4.0 WBMT ACTIVITIES AND 2014 ACCOMPLISHMENTS............................................................... 11 4.1 Annual Global Survey ......................................................................................................... 11 4.2 Scientific and Educational Conferences ............................................................................. 12 4.3 Consensus and Guideline Initiatives .................................................................................. 14 4.4 Collaboration with the WHO.............................................................................................. 15 4.5 Supporting Other HSCT Global Activities ........................................................................... 16 4.6 Website Development ....................................................................................................... 17 4.7 Research Data Task Force .................................................................................................. 17 5.0 FUTURE AIMS ......................................................................................................................... 18 6.0 PUBLICATIONS AND ABSTRACTS HISTORY ............................................................................. 19 APPENDIX A: MEMBER SOCIETIES................................................................................................ 20 APPENDIX B: EXECUTIVE COMMITTEE ELECTED OFFICERS ......................................................... 24 APPENDIX C1: CENTER SITES THAT CONTRIBUTE DATA TO THE ACTIVITY SURVEY .................... 26 APPENDIX C2: COUNTRIES THAT HAVE CONTRIBUTED DATA ..................................................... 27 APPENDIX D: HISTORY OF BOARD MEETINGS ............................................................................. 30 APPENDIX E: HISTORY OF INTERNATIONAL SCIENTIFIC SYMPOSIA ............................................. 32 APPENDIX F: PUBLICATIONS LIST ................................................................................................. 35 APPENDIX G: TERMS AND ABBREVIATIONS ................................................................................. 38 i WBMT Annual Progress Report 1.0 INTRODUCTION The Worldwide Network for Blood and Marrow Transplantation (WBMT) was formally created in 2009 after two years of discussions; there was consensus on Bylaws and an organizational structure with leaders from major hematopoietic stem cell transplantation (HSCT) and donor registries worldwide. With the interest and support of the World Health Organization (WHO), these leaders shared a mutual vision of combining efforts towards improving standardization in the global application of HSCT, cellular therapy and related fields as well as broadening the scope of data sharing. This “Federation of Societies” began with 17 international organizations now numbering 23, all with substantial interest in HSCT (Appendix A). The WBMT was incorporated as a non-profit organization for educational, scientific, and philanthropic purposes under the laws of Switzerland with headquarters in Bern. There is no fee for Member Societies, and its funding support is solicited from relevant industry. Description of the first seven years of efforts can be found in previous Progress Reports available at www.wbmt.org as they describe how those proactive clinicians and researchers shaped the WBMT into a recognizable organization, its structure and charter, its early achievements, and its future aims and goals. This report, however, focuses on the accomplishments of the WBMT during the calendar year 2014. 1.1 Early Development The four founding Member Societies of the WBMT are the Asia-Pacific Blood and Marrow Transplantation Group (APBMT), Center for International Blood and Marrow Transplant Research (CIBMTR), European Blood and Marrow Transplantation Group (EBMT), and World Marrow Donor Association (WMDA). Representatives were invited in 2007 to help identify goals, communicate them to all other societies with interest or stake in HSCT and related fields, and initiate serious planning. They recognized: HSCT is a global endeavor. There was an urgent need to coordinate the activities of the different societies active in this field. An international organization could support and even impact thoughtful, local legislation with a global perspective. During those early meetings, it was agreed that the WBMT required a unique organizational structure to fulfill its goal of coordinating HSCT, stem cell donor and cellular therapy work worldwide. It was also important that it not duplicate decades of successful efforts by other established organizations; the result was the “Federation of Societies” structure. 1.2 Working Relationship with the World Health Organization (WHO) The collaborative relationship with the World Health Organization (WHO) culminated in an invitation in 2012 to apply for Non-Government Organization (NGO) status; a comprehensive application was submitted, reviewed and then formally approved by the WHO Executive Committee in January 2013. It carries with it certain obligations affecting WBMT activities (Section 4.4). 1 WBMT Annual Progress Report As noted above, the WHO strongly supported the early collaborative and unifying efforts and representatives continue to attend meetings as “observers”, assist in planning activities, and participate as forum presenters on a variety of relevant topics. Since acquiring NGO status, WBMT is obliged to provide a set of deliverables to the WHO in constant pursuit of its educational, scientific, and philanthropic mission; see Section 4.4. 2 WBMT Annual Progress Report 2.0 COMMITTEE STRUCTURE 2.1 Board The Board is the highest tier of decision making for all WBMT activities. The WBMT Board includes elected Executive Committee officials (President, Vice-President, Secretary and Treasurer and President-elect and/or Immediate Past President) as well as a primary and alternate representative from each of the twenty-three Member Societies. Each Member Society is permitted a single vote, either by the primary or the alternate representative. The Board also includes co-Chairs of the Standing Committees (see below) who, since Bylaw changes approved during 2014, also have voting privileges. The Board meets annually in person (alternating between the winter BMT Tandem Meetings in the U.S. and the spring EBMT meetings in Europe) and holds two teleconferences, in summer and late fall, to handle issues between the in-person sessions. Meeting minutes are posted on a password-protected section of the website (www.wbmt.org). 2.2 Executive Committee The Executive Committee advises the Board and manages all business matters between Board meetings. Membership includes the elected President, Vice-President, Treasurer, Secretariat , and President-Elect and/or Immediate Past President. Additionally, appointed Chairs of the six Standing Committees (Sections 2.3 and 3.0) serve on the Executive Committee. The Executive Committee conducts monthly hour-long teleconferences and minutes of these meetings are also posted on a password-protected section of the website. Following Nomination and Election House Rules that were updated in 2013, and with input from Board members, an ad hoc Nominating Committee, including one representative from each WHO region, also convenes as necessary. There were no nomination/election activities in 2014. Appendix B displays photos and contact information for all current, elected Executive Committee members. 2.3 Standing Committees Six Standing Committees focus on areas of prime importance to the mission of the WBMT, as identified by the Executive Committee. Most of these committees were created in 2008, and co-Chairs were appointed at that time. These appointed positions were reviewed during 2014; only minor changes were made in committee leadership positions. The majority of WBMT project work is accomplished by these Standing Committees: Donor Issues Education and Dissemination of Information Graft Processing Nuclear Accident Committee (NAC) Transplant Center/Recipient Issues Regulation/Accreditation [the international Alliance for Harmonization of Cellular Therapy Accreditation (AHCTA) serves in this capacity] 3 WBMT Annual Progress Report Two or three co-Chairs lead each committee. These co-Chairs also participate in the ongoing work and decisions of the Executive Committee as noted above. Any interested individual belonging to any one (or more) of the Member Societies is eligible to join these committees; membership is solicited periodically. In late 2013 the Board approved development of the newest Standing Committee, the Nuclear Accident Committee. Implementation of such a committee within WBMT remains a work in progress; it is led by individuals from the APBMT, the EBMT and the U.S. based Radiation Injury Treatment Network (RITN). Because the committees are project driven, they meet with varying frequency, usually by teleconference. They also take advantage of related international meetings attended by many of their members for in-person dialog. 4 WBMT Annual Progress Report 3.0 STANDING COMMITTEE ANNUAL REPORTS AND 2014 ACCOMPLISHMENTS 3.1 Donor Issues Committee Committee Mission: The mission of the Donor Issues Committee is to recommend to the Executive Committee policies, programs, and actions in the area of any/all issues pertaining to the identification of stem cell donors [bone marrow (BM), peripheral blood (PB) and cord blood (CB)], harvesting procedures, product transportation, donor safety practices, and outcomes/long term follow-up within a member collection center; this includes the conduct of individuals and processes related to these procedures and practices. Leadership: The co-Chairs of this Standing Committee are: Jorge Halter (Member Society, EBMT) Vanderson Rocha (Member Society, WMDA) Meetings/Teleconferences: This Standing Committee met in person on March 31, 2014 in Milan, Italy. There were no scheduled teleconferences. Completed Projects: During 2014, this Standing Committee completed the following projects: Three papers on suitability criteria for donors with non-infectious health disorders were submitted recently (Appendix F); Speaker, Chair, and planning contribution to the 2014 Workshop in South Africa. Ongoing Projects: This Standing Committee continues to work on the following projects: Development of donor eligibility criteria for pediatric or elderly donors and donors with comorbidities. The broad project aims to provide recommendations on donor eligibility criteria for donors who would not qualify as healthy volunteer unrelated donors. Leadership: WBMT Standing Committee on Donor Issues. [Note: this initiative was on the program of a September 2013 Donor Outcome Workshop in Vienna (local organizers: Medical University Vienna, Austrian Registry for unrelated hematopoietic stem cell donors). Additional papers on pediatric donor issues and donors with infectious health disorders are in preparation. Initiation of a global survey on the use of cord blood grafts. The project aims to understand the use of cord blood grafts and exchange of cord blood grafts among different countries, cord blood banks and donor registries. This project involves many participants of WBMT, such as Eurocord, EBMT, WMDA, NMDP, CIBMTR, etc.; the targeted date of completion is 2014/2015. 5 WBMT Annual Progress Report Future Plans: This Standing Committee has identified the following projects for initiation during 2015: Preparing for a 4th Donor Outcome Workshop in 2015; Authoring recommendations for cord blood graft selection. Publication: Several papers were submitted in 2014 (see above and Appendix F). 3.2 Education and Dissemination Committee Committee Mission: The mission of the Education and Dissemination Committee is to recommend to the Executive Committee policies, programs, actions and materials pertaining to the development or design of resources prepared for the express purpose of educating a populace about HSCT. This committee collaborates with all partners within the WBMT - but particularly the ESH - and assists in “single voice” preparation of opinion or advisory materials for the WBMT and/or WHO. It plays an important role in Workshop program design. Leadership: The Chair of this Standing Committee is: Eliane Gluckman (European School of Hematology, ESH and Eurocord) Meetings/Teleconferences: This Standing Committee met in person on March 31, 2014 in Milan, Italy. Completed Projects: During 2014, this Standing Committee completed the following projects: Publication on line of the 6th Edition of the ESH-EBMT handbook on hematopoietic stem cell transplantation; Translation of the ESH-EBMT Handbook into Spanish and Portuguese with Drs. Adriana Seber and Belinda Simoes (in collaboration with the Brazilian Society of Hematology); ESH-EBMT training course in Vienna, May 2014; Organisation of the World Cord Blood Congress V in Monaco, March 2015; Speaker, Chair, and planning contribution to the 2014 Workshop in South Africa. Ongoing Projects: This Standing Committee continues to work on the following projects: Translation of the ESH-EBMT Handbook into Portuguese with the help of the Brazilian Society of Hematology; Organization of an ESH-EBMT HSCT training course in Malaga, Spain in May 2015; Educational book on bone marrow failure syndromes; Educational book on hemoglobinopathies. 6 WBMT Annual Progress Report Future Plans: This Standing Committee has identified the following projects for initiation during 2015: Developing new educational tools (e.g., e-learning program, webinar conferences); Developing online training programs; Participating in the creation of an International Continuing Medical Education (CME) accreditation plan. Publications: There were none in 2014. 3.3 Graft Processing Committee Committee Mission: The mission of the Graft Processing Committee is to recommend to the Executive Committee policies, programs, and actions in the area of any/all issues pertaining to the handling of a harvested product: storage, preparation and manipulation equipment, product transportation practices, and documentation within a member cell processing center; this includes the conduct of individuals and processes related to these procedures and practices. Leadership: The co-Chairs of this Standing Committee are: Mickey Koh (Member Society, International Sociey of Blood Transfusion, ISBT) Carolyn Taylor [Member Society, Foundation for the Accreditation of Cellular Therapy, (FACT)] Meetings/Teleconferences: This Standing Committee met in-person in Milan (April 2014) and co-Chairs and committee representatives attended the ISCT meeting in Paris (May 2014). There was a joint call with the ISCT group regarding the Cellular Tourism project on October 2, 2014 and a committee teleconference conducted on October 17, 2014. Completed Projects: During 2014, this Standing Committee participated in the following projects: Expertise and technical assistance provided (with Dr. David Ma; APBMT) on the setting up of an autologous transplant programme in Myanmar; subsequently successfully transplanted one patient with myeloma; Speaker, Chair, and planning contribution to the 2014 Workshop in South Africa. Ongoing Projects: This Standing Committee continues to work on the following projects: Continuing updates to FAQs document: Project Leader, Carolyn Taylor; Collaborating with ISCT on the issue of Cell Therapy Medical Tourism in hopes of presenting this important topic to the WHO General Assembly in 2015; 7 WBMT Annual Progress Report Continuing representation of WBMT in the WHO initiative on Medical Products of Human Origin (MPHO; see Section 4.4). Future Plans: This Standing Committee has identified the following projects to initiate during 2015: Creating a map of Cell Processing laboratory facilities worldwide; Collaborating with ISCT on the issue of Cell Therapy Medical Tourism in hopes of presenting this important topic to the WHO General Assembly; Collating the differing practises for cryopreservation worldwide focusing on methodologies which are not dependent on the availability of controlled rate freezing; Working with the EBMT Cellular Therapies Working Party. Publication: The following manuscript was the result of the efforts of this Standing Committee: Minimal Requirements and Essential Features for Setting up a Stem Cell Processing Laboratory: Leemhuis T, Padley D, Keever-Taylor C, Teshima T, Lanza F, Chabannon C, Szabolic P, Bazarbachi A, Koh M; on behalf of the Graft Processing Subcommittee of the Worldwide Network for Blood and Bone Marrow Transplantation (WBMT). Bone Marrow Transplantation 2014 Aug; 49 (8):1098-105 (see Appendix F). 3.4 Transplant Center/Recipient Committee Committee Mission: The mission of the Transplant Center/Recipient Committee is to recommend to the Executive Committee policies, programs, or actions in the area of any/all recipient issues pertaining to the performance of hematologic transplantation and other cellular therapies/procedures within a member transplant center; this includes recording recipient outcomes, maintenance of records and the conduct of individuals and processes carrying out these procedures and practices. Effective in 2014, this committee will also administer all activities related to the global transplant activity reports and data use proposal reviews. Leadership: The co-Chairs of this Standing Committee are: Marcelo Pasquini (Member Society, CIBMTR) Jane Apperley (Member Society, JACIE) Meetings/Teleconferences: This Standing Committee did not meet in person during 2014, but the two co-Chairs met extensively while in Milan, Italy. Due to their lead role in the Research Task Force (see section 4.7), there were 2 teleconferences related to this project in 2014. Completed Projects: During 2014, this Standing Committee completed the following projects: 8 WBMT Annual Progress Report Draft preparation of the Research Guidelines document (see section 4.7) Speaker, Chair, and planning contribution to 2014 Workshop in South Africa. Ongoing Projects: This Standing Committee continues to work on the following projects: Recommending “Minimal requirements” for reporting data to a registry; implemented by APBMT participating centers in 2012; Providing leadership for the Research Data Activities Task Force and designing the format/structure for presentation of a series of transplant center global survey reports indicating volume data, center information and trends. These will be made available to all Member Societies. Future Plans: This Standing Committee has identified the following projects to initiate during 2014: Completing a “Minimal Requirements” document for transplant centers and submit for publication. Initiating a transplant cost initiative as an exploratory project on costs and charges of transplant around the world. This would include a comparison of transplant cost (in any country or region regardless of development level) versus non-transplant therapies for certain indications. An end product will be publication of this scientific report. Developing an annual report from the Global Transplant Activity in a form of a slide set to be available to all member societies in the WBMT website Publication: During 2014, the following manuscript was the result of the efforts of this committee: Challenges and Opportunities for HSCT Outcome Registries; Perspective from International HSCT Registries Experts: Aljurf M, Rizzo J D, Mohty M, Hussain F, Madrigal A, Pasquini MC, Passweg J, Chaudhri N, Ghavamzadeh A, El Solh H, Atsuta Y, Szer J, Kodera Y, Niederweiser D, Gratwohl A, Horowitz MM. Submitted to BMT in late 2013 and published as a Special Report during 2014 (see Appendix F for full citation). 3.5 Regulation and Accreditation Committee* (AHCTA) *(managed by the Association for the Harmonization of Cellular Therapy Accreditation; AHCTA) Committee Mission: The mission of the Regulation and Accreditation Committee is to recommend to the Executive Committee policies, programs, and actions in the area of any/all issues pertaining to regulatory matters, practices and codes with both inter- and intra-national implications. This involves procedures related to all activities of the other five Standing Committees. In its vigilance to avoid duplication of efforts, WBMT members agreed early (2009) that AHCTA shall fulfill the role of the WBMT Regulation and Accreditation Committee. 9 WBMT Annual Progress Report Leadership: The Chair of this Standing Committee is: Kathy Loper (Member Society, AABB) Meetings/Teleconferences: The committee generally meets by teleconference once per month (the first Wednesday of the month) and in person once or twice per year, as international conference attendance permits. During 2014, this Standing Committee met twice in person and held ten committee calls as well as several project team calls. Completed Projects: During 2014, this Standing Committee completed the following projects: Publication of a paper on cell collection staff training (see below and Appendix F); Launch of a survey of training practices for human progenitor cell (HPC) and bone marrow collection and accumulated results. Analysis is ongoing and publication planned; Resource update on website, www.ahcta.org; Launched a LinkedIn group for AHCTA (late 2014); Speaker, Chair, and planning contribution to the 2014 Workshop in South Africa. Ongoing Projects: This Standing Committee continues to work on the following projects: Completing the training practices survey for laboratory staff. Once completed, the recommendations will be submitted for publication. Project Leads: C Keever-Taylor; I Cortenbach-Slaper. Collaborating with and support of LABMT by assisting with webinars and educational program development. Future Plans: This Standing Committee hopes to identify, during 2015, new projects that would serve the HSCT community and align with the mission of AHCTA and WBMT. Publication: The following paper was first submitted to Transfusion in December 2013, accepted in spring 2014 and published in December 2014; see Appendix F for full citation. Training Practices of HPC(A) and HPC(CB) Collection Staff: Analysis of a Survey by the Alliance for Harmonisation of Cellular Therapy Accreditation; Celluzzi CM, Keever-Taylor C, Alurf M, Koh K, Rabe F, Rebulla P, Sacchi N, Sanders J, McGrath E, Loper, K on behalf of The Alliance for Harmonisation of Cellular Therapy Accreditation (AHCTA). 10 WBMT Annual Progress Report 4.0 WBMT ACTIVITIES AND 2014 ACCOMPLISHMENTS The WBMT engages in a variety of activities including: Generating an annual global survey of HSCT activity; Conducting scientific and educational conferences; Developing consensus guidelines for optimum delivery of HSCT services and accreditation of HSCT facilities; Collaborating and consulting with the WHO to promote excellence in HSCT, stem cell donation and cellular therapy; Supporting other global HSCT activities; Developing a Website for broad communication; Establishing research guidelines within this global HSCT community. 4.1 Annual Global Survey WBMT leaders agreed in early formative years that a first initiative should be to conduct annual global surveys of activity performed by transplant centers (Appendices C1 and C2); a minimal yet essential level of activity information is requested of participating centers. The annual survey displays volume of, and main indications for, allogeneic and autologous HSCT activity. These data were previously unknown, and centers were not represented on a map. WBMT needed these baseline data to support future projects and assist countries in increasing their activity levels and/or in the development of new transplant programs. The WBMT survey reporting sheet is available on the website (http://www.wbmt.org/en/ wbmt-survey), along with disease indications for HSCT and accompanying main- and sub-class codes for use in completing the survey. WBMT continues to promote the annual survey by publishing findings biannually and presenting results periodically at international meetings (Appendix E); data are presented internationally at least once annually. WBMT also encourages other, newer groups forming their own registries to participate in the survey [e.g., Latin American Blood and Marrow Transplant Society (LABMT), African Blood and Marrow Transplant group (AFBMT)]. These data are also provided to the Global Observatory for Donation and Transplantation (Section 4.1.2). A new tool (Transplant Activity Survey; TAS) was designed for the WBMT Activity Survey that allows the reporting of transplant activity via the web using a simple, user-friendly input form that is similar to the reports (easy, single page record) already being provided to WBMT via a regional transplant society, national Registry or by individuals at the team/center level – and mathematical calculations are performed automatically avoiding human error. Activity data can still be entered at either the country or center level. These data do not represent an outcome registry, but the TAS is a mechanism by which each country’s annual data can be registered to the WBMT (in the format of the survey sheet that WBMT has used historically) and put to further use within the reporting organization. These data are used in the following ways. 11 WBMT Annual Progress Report 4.1.1 Team access These activity data can be used at the team level for those countries/societies (e.g. LABMT, AFBMT) that do not have an existing data collection system. If an outcome registry were to be developed, it could potentially use the TAS to identify the activity in those countries that are outside other data collection systems (e.g., CIBMTR, EBMT, etc.), providing a mechanism for follow-up. An idea was presented recently suggesting that outcome data reported to the CIBMTR could be provided back to new reporting teams in the future via its “Data Back to Center” Program. This project remains a work in progress. 4.1.2 Organización Nacional de Transplantes, ONT Data on international use of HSCT are gathered inconsistently across the globe but usually by registries and professional societies. The Department of Essential Health Technologies of the WHO and the Spanish National Transplant Organization (Organización Nacional de Transplantes, ONT) established the Global Observatory on Donation and Transplantation beginning in 2007. These collaborative activities help to meet the requirements of the 57th World Health Assembly Resolution WHA57.18. This resolution suggests that the collection of global data on the practices, safety, quality, efficacy and epidemiology of transplantations, their global availability for all those concerned, including professionals, patients, politicians and the general public, are all recognized as a prerequisite for global improvement of, and better access to, transplantations [(Organs, Tissues and Cells, (2), 91-94, 2007]. One goal of the Observatory is the development of a global database on donation and transplantation. WBMT Member Societies, particularly the WMDA and Bone Marrow Donors Worldwide (BMDW), contributed substantially by providing unrelated donor information from their own databases to this Observatory databank. WBMT provided its first activity contribution to the Global Observatory in 2012 with Global Survey data from 2006-2008, and now updates these data as they become available. The 2009-2010 data were provided by WBMT in April 2014. 4.2 Scientific and Educational Conferences 4.2.1 Joint Scientific/International Symposia Scientific conferences are an important activity of the WBMT for communicating with other clinicians and researchers. WBMT conducts an annual 90 minute Scientific/International Symposium first presented during the U.S.-based CIBMTR BMT Tandem Meetings (co-sponsored with the American Society for Blood and Marrow Transplantation, ASBMT) each February, and then essentially repeated during the annual EBMT meeting in spring. These meetings represent the premier gathering in the U.S. and in Europe for clinicians and researchers interested in HSCT. The focus is similar for each of the two WBMT Symposia with the same topics, but occasionally with different expert speakers due to logistical considerations. See Appendix E for a list of annual Symposia programs since WBMT began coordinating them in 2009. Planning for these 2015 sessions occurred during late 2014. 12 WBMT Annual Progress Report 4.2.2 WBMT Workshops The WBMT also sponsors Workshops in regions with constrained resources, a demonstrated need and interest, and clinicians who wish to expand existing transplant programs or to start a new program. These activities are aimed at regions where resources and unique factors present challenges to clinicians wanting to provide easier access to their peoples in need of this modality. The WBMT leverages the skills and expertise of its Education and Dissemination Standing Committee and the European School of Haematology (ESH, a WBMT Member Society) along with all other Standing Committees, in planning these programs. A first two-day Workshop (and associated one-day Scientific Symposium) was conducted in Hanoi, Vietnam, in late 2011, in cooperation with the WHO and in partnerships with the APBMT and a local Vietnamese Organizing Committee. A descriptive manuscript is near completion for submission to two peer-reviewed journals: Blood and Marrow Transplantation and Biology of Blood and Marrow Transplantation. One important result of the Hanoi Workshop was the suggestion that WBMT conduct training programs for physicians who lead transplant programs abroad. Since then, several teaching fellowships materialized during 2013 and 2014 including practitioners from Vietnam (Hanoi and Ho-Chi-Minh), Mongolia, Qatar, the Philippines and Cambodia cross-training in Japan, Korea, Belgium or Germany. Another positive outcome of this Workshop was the networking opportunity that resulted in Myanmar and Bangladesh representatives establishing an HSCT program under the guidance of WBMT members who participated in the 2011 Workshop. 4.2.2.1 2013 Brazilian Experience With these successes in mind, and a commitment by the WBMT Board to support the Latin American Blood and Marrow Transplantation Society (LABMT, a new WBMT Member Society since 2013), a local organizing committee indicated strong interest in co-hosting a Workshop with a Program similar to that conducted in Hanoi. After many months of planning a second 2day Workshop (and 1-day Scientific Symposium) convened in late 2013 in Salvador-Bahia, Brazil. Indications onsite and since are that participants thought this was a successful and valuable collaborative venture, but the most visible measurement of success is the high level of organization and productivity since the Workshop, resulting from the active output of the LABMT. There are regular monthly and annual meetings, all standing committees (modelled after WBMT committees) are very actively fulfilling missions, and, not only have there been publications in peer-reviewed journals, but an LABMT abstract was accepted for oral presentation during the 2014 American Society of Hematology (ASH) meetings. These are achievements of a group that admitted during the 2013 Workshop that they had never met before an integrated group. Also important were the contributions of several LABMT members in the planning and production of the 2014 Workshop held in Cape Town, South Africa. 4.2.2.2 2014 South African Experience Cape Town, South Africa was the site of the 3rd WBMT Workshop again convened in collaboration with the WHO and a local, South African planning committee. These sessions occurred on November 14, 15 and 16, 2014. They were attended by the largest audience yet including representatives of 34 countries, 20 of which were African. There were 212 registrants though not 13 WBMT Annual Progress Report all were able to attend and for the first time Workshop evaluations were distributed onsite with a 44.8+% return; these are not yet fully assessed but contain primarily positive responses and comments. The scientific Program was customized to address blood transfusion safety - a special problem on the continent - and logistically included far more open dialog time than in previous Workshop programs. A strong emphasis was placed on the value of activity reporting and formation of local databases. It is hoped that an increase in reporting to the WBMT from the African continent will be a measurable outcome of this 3 rd Workshop. As was true both in 2011 and 2013, a broad spectrum of expert planners and presenters were from Europe, the Far East, Mediterranean region, and the U.S., augmenting a cadre of regional speakers. Programs for all three Workshops are available at www.wbmt.org. As was true after the Brazilian Workshop, WBMT encourages and strongly supports a more formal structure and activity level of an African Blood and Marrow Transplantation group (AFBMT). It met first in Lagos, Nigeria in 2011 and an application for status as a WBMT Member Society is expected in early 2015. Already there are preliminary discussions about a 4th WBMT Workshop. The idea for future Workshops is to focus more on smaller regions (vs entire continents) with an aim to assist in expansion and improvement of existing Programs. 4.2.3 Donor Outcome Workshop 2013 The WBMT Donor Issues Standing Committee, having sponsored three successful Donor Outcome Workshops previously (in 2009, 2011 and in 2013) anticipates a 4th session during 2015; plans are in progress. Recommendations on suitability criteria for donors with non-infectious health disorders as well as donors with comorbidities were topics in the past resulting in manuscripts submitted for publication (See Appendix F, 2014). Previous accomplishments of this committee, as a result of these Workshops, include generation of several publications describing recommendations for minimal datasets for collecting donor data and assessing donor outcomes. 4.3 Consensus and Guideline Initiatives The primary purpose of the WBMT is to serve as a single voice – at a global level – for HSCT and related issues. With the support of its Board, WBMT publicizes its sentiments on controversial or critical matters on its website and/or collaborates with other likeminded groups in opinion solidarity. Previously this included WBMT positions on support of standardized product labelling and rejection of financial reimbursement for donation of cellular products; details can be seen in previous Progress Reports and formal statements are available at http://wbmt.org/ and, regarding reimbursement for donors, also at: http://marrow.org/News/News_Releases/2012/Coalition_says_PBSC_donor compensation_poses_health_risks_to_patients_and_donors.aspx. More recently, some Standing Committees have authored substantial works, either independently or collaboratively, on standardization of practice topics (e.g., minimal requirements, etc.) associated with respective committee mandates (Section 3.0 and Appendix F). 14 WBMT Annual Progress Report 4.4 Collaboration with the WHO As noted previously, a WHO representative has been involved with WBMT activities since the earliest concept development meetings. WBMT maintained a “working relationship” with the WHO for almost four years thereafter when, meeting important criteria, it was officially invited to apply for NGO status. NGO status provides WBMT with the opportunity to continue its work on a more formal basis in partnership with the WHO in promoting excellence in HSCT, stem cell donation, and cellular therapy. These efforts all came to fruition with the January 2013 NGO status approval which, as implied above, brings with it partnership demands and participation in other WHO initiatives in pursuit of mutual educational, scientific, and philanthropic missions. An example of a WHO initiative in which WBMT representatives participate is the ongoing NOTIFY Project having attended a first meeting in Bologna in 2011 and remaining involved through the group’s last meeting in December 2013 in Brasilia, Brazil. One sub-project of the broader NOTIFY Project is referred to as BIG V&S (Bologna Initiative for Global Vigilance and Surveillance), coordinated by the WHO and the Italian National Transplant Centre (CNT) in further collaboration with the SOHO V&S (Vigilance and Surveillance of Substances of Human Origin) project. An important accomplishment of the NOTIFY group of experts was the development of the NOTIFY Library – a large database launched in December 2013 for access to global data revealing instances of adverse outcomes. WBMT was in a unique position to make important recommendations to this group in Brasilia, including suggestions regarding changes in cell type taxonomy data items and better use of keywords specifically related to cellular therapies contained within. WBMT representatives also recommended that an editorial board be formed including more specialists in hematopoietic progenitor cell therapies and to improve website navigation processes, etc. The experts in this “Blood Working Group” will eventually join existing editorial working groups and, as the work develops, an Editorial Group will be established for Transfusion Reactions. Though planned for 2014, an in-person meeting had to be cancelled. During 2014 there were two more initiatives in which WBMT representatives were very involved in partnership with the WHO. WBMT is one of four WHO NGOs assigned to the Medical Products of Human Origin (MPHO) project. An international guidelines document, largely focused on donor concerns, is currently under circulation amongst the four participating NGOs. The aim is to present the document to the WHO Executive Committee in late January 2015 for final approval and implementation. The other initiative in which WBMT members have been more actively involved during 2014 is that of cellular therapy tourism – most importantly, the risks involved particularly to recipients. The International Society of Cellular Therapy (ISCT, a WBMT Member Society) took first lead and collaborated with others in preparing a statement warning the public of considerations when going abroad seeking cellular therapy of one kind or another for a medical problem. WBMT was invited to participate in the project and representatives recently contributed to a revised guidelines document which is also now under review for broader circulation. 15 WBMT Annual Progress Report A report on both of these last two initiatives is scheduled for presentation by the WBMT WHO observer/partner during the 2015 WBMT Scientific International Symposium at both the BMT Tandem Meetings and EBMT meetings. The 2012 NGO application process distinguished those collaborative projects already in progress (or completed) at the time , versus those projected for the subsequent three-year period (should WBMT be approved as an NGO partner). With the award of official NGO partnership status in 2013, WBMT is now obligated to continue its work on specific identified projects at least through early 2016 when the WHO reviews WBMT accomplishments and approves maintaining the relationship. Those activities in progress or already completed in 2012 were: Collect and share data (Section 4.1 and 4.1.2); Conduct Workshops (Section 4.2.2, 4.2.3); Provide technical and scientific support (Section 4.1, 4.2, 4.3 and 4.4); Foster and shepherd development of regional HSCT societies (Section 4.5). Those activities to which WBMT committed in its NGO application (and were subsequently approved) are: Work with the Global Observatory on Donation and Transplantation (Section 4.1.2); Promotion of access to HSCT – stem cell donation (Section 4.2); Develop a Donation Guidance Document (Section 4.2.3); Promotion of access to HSCT – stem cell transplantation (Section 4.2, 4.3 and 4.5); Technical and Scientific Input on Safety and Quality of HSCT (Section 4.2 and 4.3); Global Consultation on Ethics, Safety and Access to HSCT (Section 4.2, 4.3 and 4.4); Initiative for Global Vigilance and Surveillance of Adverse Reactions and Events (Section 4.4); Consultation Services (Section 4.0; ad hoc). These final eight specific activities form the foundation for the continued work of the WBMT. 4.5 Supporting Other HSCT Global Activities In addition to the above, WBMT has been instrumental in supporting the now highly successful development of the new LABMT. The LABMT first met in 2010 and approved an interim Board; they passed bylaws in December 2012. The full group met during the 2013 BMT Tandem Meetings in Salt Lake City; its application for formal WBMT Member Society status was approved by the WBMT Board in February 2013. During the October 2013 Workshop, the group conducted a business meeting during which an Executive Committee was elected; the committee has been meeting regularly since. Similarly, in November 2011, the WBMT became involved in supporting establishment of an African Blood and Marrow Transplant Group (AFBMT) when invited to attend a meeting in Nigeria which included South African representatives as well. They are of similar mind to form an expended African group of HSCT clinicians. A small, interim Executive Committee now exists to begin the building process; a leader is in place and WBMT awaits their formal application for 16 WBMT Annual Progress Report Member Society status. The WBMT places high focus on the AFBMT as it represents the single remaining continent that has not uniformly reported transplant activity or outcome data. Both groups have been encouraged to commit to participate in the annual WBMT global activity survey noted above (section 4.1). A positive outcome of the Workshop in Latin America is the numerous new transplant centers providing activity data to this survey. The same consequence is anticipated as a result of the just completed 2014 Workshop in Africa as several participants indicated on evaluations a willingness to begin reporting HSCT activity data. This is an important step forward in addressing the current gap in acquisition of data from these regions. 4.6 Website Development The WBMT website, launched in 2010, is hosted and serviced in Bern, Switzerland, by the Swiss Blood Stem Cells group. Identifying itself via the internet was an important first step in the evolution of the WBMT. Substantial effort is placed continually into posting current documents such as meeting minutes and Workshop/Symposium Programs as well as important newsworthy items (e.g., approved NGO status with the WHO, one millionth transplant announcement in early 2013, consensus statements, etc.). During 2014, the website was particularly effective in dissemination of the Workshop and Scientific Symposium notices and programs as well as registration processes. Further attention was paid this past year to making available starter pages for notices and meeting documents for the LABMT and AFBMT. 4.7 Research Data Task Force In Salt Lake City in 2013, the WBMT Board mandated development of a Task Force for the purpose of developing guidelines for management and use of the WBMT Global Activity data as well as guidelines for how general research should be managed in collaboration amongst WBMT Member Societies. There were numerous teleconferences and then a report to the Board in December 2014 during which the Board approved an important recommendation that the Transplant Center and Recipient Standing Committee (see Section 3.4) administer all activities related to the global transplant activity survey, reports and proposal reviews. The guidelines document revisions are almost complete and the Task Force will present to the Board a final time in February 2015. Once completely approved, the document will be posted on the WBMT website. 17 WBMT Annual Progress Report 5.0 FUTURE AIMS WBMT continues to evolve, and though it has identified many activities with which it wants or needs to be involved, limited resources and availability of this volunteer group of leaders and committee members affect the selection of projects for its portfolio. In addition to the plans identified in Section 3.0 by each of the Standing Committees, the Executive Committee is assessing priority activities for 2015 and beyond. They are to: Establish a more durable mechanism for soliciting and sustaining high level financial support. Continue close collaboration with the WHO on global projects relevant to HSCT and fulfilling WBMT responsibilities as an NGO. o Complete work on the Medical Products of Human Origin (MPHO) project. o Continue collaboration on the cellular tourism project with the ISCT and other WBMT Member Societies. Complete the Hanoi Workshop manuscript. o Publish an algorithm for establishing a new HSCT program as identified during the Hanoi Workshop. Complete the Salvador Workshop report, and begin drafting its manuscript. Complete the Africa Workshop report and begin drafting its manuscript. o Continue efforts in support of an AFBMT. Consider a 4th Workshop and Scientific Symposium. o Adjust the approach from continental to regional. Continue the mission of the Reserach Data Task Force for identification of proper procedures for research coordinated by the WBMT. Establish a fully operational, global level, Nuclear Accident Standing Committee in collaboration with existing nuclear accident committees to extend the concept of “speaking with one voice”. Continue developing the concept of a related donor registry in association with the Donor Issues Committee’s long term agenda. Continue support of transplant center twinnings and/or cross-training activities. Continue efforts towards establishing a unique Global Transplant Center Number (GTCN) to improve data sharing capabilities at a global level. 18 WBMT Annual Progress Report 6.0 PUBLICATIONS AND ABSTRACTS HISTORY Some works are published on behalf of WBMT whereas others are credited to a WBMT Standing Committee. Appendix F displays the complete WBMT publication portfolio while identifying which entity is credited; it includes those manuscripts submitted during 2014 but remaining under review. A WBMT abstract history since inception is as follows: The following abstract was submitted on behalf of the WBMT and accepted for poster presentation at the American Society of Hematology (ASH) meetings in December 2013: Global Hematopoietic Stem Cell Transplantation (HSCT) At One Million: An Achievement Of Pioneers and Foreseeable Challenges For The Next Decade. A Report From The Worldwide Network For Blood and Marrow Transplantation (WBMT). Dietger Niederwieser, MD, Marcelo C Pasquini, MD, MS, Mahmoud D. Aljurf, MD, Dennis L. Confer, MD, Helen Baldomero, Luis Fernando Bouzas Sr., MD, MSC, PhD, Mary M. Horowitz, MD, MS, Minako Iida, MD, Yoshihisa Kodera MD, PhD, Jeffrey H. Lipton, MD, PhD, Machteld Oudshoorn, Eliane Gluckman, MD, Jakob R. Passweg, MD, Jeffrey Szer, MD, Nicolas Novitzky, MD, PhD, Jon J. van Rood, MD, Luc Noel, MD, J. Alejandro Madrigal, MD, PhD, Karl Frauendorfer, Alois Gratwohl, MD and Frederick R. Appelbaum, MD The following abstract was presented as a poster on behalf of the WBMT at the ASH meetings in December 2012: Clinical Allogeneic and Autologous Transplantation - Results: Poster II Global Trends in Hematopoietic Cell Transplantation. Helen Baldomero, Mahmoud Aljurf, MD, Luis Fernando Bouzas, MD, MSC, Alois Gratwohl, MD, Yoshihisa Kodera, MD, PhD, Jeff H Lipton, MD, J. Alejandro Madrigal, MD, PhD, Iida Minako, MD, Nicolas Novitzky, MD, PhD, Marcelo C Pasquini, MD, MS, Jakob R. Passweg, MD, Adriana Seber, MD, Jeffrey Szer, MBBS and Dietger Niederwieser, MD The following abstract was presented orally on behalf of the WBMT at the ASH meetings in December 2011: Global use and trends in hematopoietic stem cell transplantation: A targeted approach for a widening gap. Dietger Niederwieser, MD, Helen Baldomero, Michael Gratwohl, Mahmoud Aljurf, MD, Luis Fernando Bouzas, MD, MSC, Mary Horowitz, MD, MS, Yoshihisa Kodera, MD, PhD, Jeff Lipton, MD, PhD, Iida Minako, MD, Marcelo C. Pasquini, MD, MS, Jakob Passweg, MD, Jeff Szer, MD, Alois Gratwohl, MD, Karl Frauendorfer for the Worldwide Network of Blood and Marrow Transplantation. For more information about items included in this report, please contact any WBMT Officer (Appendix C). 19 WBMT Annual Progress Report APPENDIX A: MEMBER SOCIETIES Organization AABB www.aabb.org American Society for Histocompatibility and Immunogenetics (ASHI) www.ashi-hla.org American Society of Blood and Marrow Transplantation (ASBMT) www.asbmt.org Asia Pacific Blood and Marrow Transplantation (APBMT) www.apbmt.org Australasian Bone Marrow Transplant Recipient Registry (ABMTRR) www.abmtrr.org Bone Marrow Donors Worldwide (BMDW) www.bmdw.org Center for International Blood and Marrow Transplant Research (CIBMTR) www.cibmtr.org Description AABB, formerly known as the American Association of Blood Banks, is an international non-profit association committed to advancing the practice and standards of transfusion medicine and cellular therapies to optimize patient and donor care and safety. ASHI is a non-profit association of clinical and research professionals that is dedicated to advancing the science and application of histocompatibility and immunogenetics as well as advocating the highest standards of laboratory testing in the interest of optimal patient care. ASBMT is an international association that promotes the advancement of the HSCT field by representing the interests of transplant clinicians and investigators as well as the patients they serve. A Founding Member: APBMT is an international organization of HSCT researchers that allows physicians in Asian countries involved in HSCT to share their experience and develop cooperative studies. ABMTRR promotes HSCT research and helps provide access to and information about HSCT to people in Australia and New Zealand. BMDW is a voluntary collaborative effort of stem cell donor registries and cord blood banks whose goal is to provide centralized information on the HLA phenotypes and other relevant data of unrelated stem cell donors and cord blood units and to make this information easily accessible. A Founding Member: CIBMTR collaborates with the global scientific community to advance hematopoietic cell transplantation and cellular therapy research worldwide. A combined research program of the National Marrow Donor Program® and the Medical College of Wisconsin, CIBMTR facilitates transplant outcome research that has led to more than 800 peer-reviewed publications. These publications have contributed to increased survival and an enriched quality of life for many transplant patients. 20 WBMT Annual Progress Report Organization Eastern Mediterranean Blood and Marrow Transplantation (EMBMT) www.embmt.org Eurocord www.eurocord-ed.org European Federation for Immunogenetics (EFI) www.efiweb.eu European Group for Blood and Marrow Transplantation (EBMT) www.ebmt.org European Leukemia Network (ELN) http://www.leukemia-net.org European Marrow Donor Information System (EMDIS) www.emdis.net European School of Haematology (ESH) www.esh.org Foundation for the Accreditation of Cellular Therapy (FACT) www.factwebsite.org Description EMBMT promotes all aspects of patient care, academic, and research activities associated with HSCT in eastern Mediterranean countries with the goal of sharing experience, initiating cooperative trials, and establishing common strategies to advance the field of HSCT. Eurocord promotes national and international collaborations and disseminates HSCT knowledge. The Eurocord registry operates on behalf of the EBMT, and Eurocord works in close collaboration with Netcord cord blood banks and EBMT centers and database. EFI aims to promote research in immunogenetics, histocompatibility testing, and HSCT. It promotes the advancement of immunogenetics in Europe and supports research and training in the field. A Founding Member: EBMT aims to improve outcomes of HSCT and provide information to the public about developments in the field by sharing the experience of European centers and encouraging cooperative research among scientists and physicians in the HSCT field. The European Leukemia Network is a research network of 194 participating centers in 39 countries all cooperating in the Network The goal is a cure of leukemia by integration of European leukemia research. The website delivers information (in various European languages) for physicians, patients (e.g. patient organisations in Europe), ongoing clinical trials and further information about leukemia. The EMDIS system integrates the databases of European blood and marrow donor registries allowing data exchange from and to heterogeneous systems and nationwide area networks. ESH is a non-profit institution for continuing education that promotes and facilitates access to research in hematology and related disciplines in Europe, North America, North Africa, and the Middle East. ESH also develops tools for continuing education produced in collaboration with international experts in the field. FACT is a non-profit organization that establishes standards for high-quality medical and laboratory practices in cellular therapies for the purposes of voluntary inspection. 21 WBMT Annual Progress Report Organization International Council for Commonality in Blood Banking Automation (ICCBBA) http://iccbba.org/ Description ICCBBA is a not-for-profit, tax exempt, non-government organization responsible for management of the ISBT 128 Information Standard for Blood and Transplantation, a global standard for the terminology, identification, labeling, and information transfer of human blood, cell, tissue, and organ products across international borders and disparate health care systems. It ensures the highest levels of accuracy, safety, and efficiency for the benefit of donors, patients, and ISBT 128 licensed facilities worldwide. The system features a unique, highly flexible, and comprehensive coding method for every collected product and provides international consistency to support the transfer, transfusion, or transplantation of blood, cells, tissues and organs. International Society of Blood ISBT is an international professional society that faciliTransfusion (ISBT) tates knowledge about transfusion and transplantation www.isbtweb.org science and medicine. International Society of Cellular ISCT is a global association that promotes cellular theraTherapy (ISCT) pies research by fostering international translational www.celltherapysociety.org research, driving commercialization strategies, and providing education. Joint Accreditation Committee-ISCT JACIE is a non-profit organization that assesses and pro(Europe) & EBMT (JACIE) vides accreditation in the field of HSCT. Its primary aim is www.jacie.org to promote high-quality patient care and laboratory performance in hematopoietic stem cell collection, processing and transplantation through an internationally recognized system of accreditation. It partners with EBMT, ISCT, and FACT. Latin American Bone Marrow The purpose of this group is to provide a mechanism Transplantation group (LABMT) through which Latin American Blood and Marrow Transwww.wbmt.org plant and Hematology groups can collaborate and engage in scientific and educational activities and endeavours to promote excellence in stem cell transplantation, stem cell donation, cellular therapy and hematologic practices. Activities include data collection and sharing outcome information. Netcord The International NetCord Foundation is a non-profit www.netcord.org association of umbilical cord blood banks whose members comprise the largest source of high-quality cord blood grafts for patients in need of HSCT. 22 WBMT Annual Progress Report Organization World Marrow Donor Association (WMDA) www.worldmarrow.org Description A Founding Member: WMDA is a global association whose mission is to assure that high-quality stem cell products are available for all patients in need, while maintaining the health and safety of the volunteer donors. 23 WBMT Annual Progress Report APPENDIX B: EXECUTIVE COMMITTEE ELECTED OFFICERS President Yoshihisa Kodera, MD Department of Promotion for Blood and Marrow Transplantation Aichi Medical University School of Medicine 1-1 Yazakokarimata, Nagakute Aichi 480-1195 Japan Tel: +81 561 62 3311 (Ext. 2375) Fax: +81 561 61 3180 ykodera@river.ocn.ne.jp Vice-President Daniel Weisdorf, MD Professor of Medicine Director Adult Blood & Marrow Transplant Program University of Minnesota MMC 480, Minneapolis, MN 55455 USA Tel: +1 612 624 3101 Fax: +1 612 625 6919 weisd001@umn.edu Immediate Past-President Dietger Niederwieser, MD Professor of Medicine, Dr. h. c. Division of Hematology and Medical Oncology Univ. of Leipzig, Johannisallee 32A 04103 Leipzig, Germany Tel: +49 341 97-13050 Fax: +49 341 97-13059 dietger@medizin.uni-leipzig.de 24 WBMT Annual Progress Report Treasurer Dennis Confer, MD Chief Medical Officer 3001 Broadway Street N. E. Suite 100 Minneapolis, MN 55413-1753 Tel: +1 612 362 3425 Fax: +1 612 845 0882 dconfer@nmdp.org www.marrow.org Secretariat Hildegard Greinix, MD I. Med. Univ. Klinik, KMT Währinger Gürtel 18-20 A-1090 Wien Austria Tel: +43 1 40400 4402 Fax: +43 1 40400 5701 hildegard.greinix@meduniwien.ac.at 25 WBMT Annual Progress Report APPENDIX C1: CENTER SITES THAT CONTRIBUTE DATA TO THE ACTIVITY SURVEY 26 WBMT Annual Progress Report APPENDIX C2: COUNTRIES THAT HAVE CONTRIBUTED DATA *Maximum number of teams in any one survey year 2006-2012 WHO Region Country Number of Teams EMR/AFR Algeria 2 AMR/PAH Argentina 22 SEAR/WPR Australia 41 EUR Austria 13 EUR Azerbaijan 1 EUR Belarus 2 EUR Belgium 20 EUR Bosnia and Herzegovina 2 AMR/PAH Brazil 41 EUR Bulgaria 2 AMR/PAH Canada 26 AMR/PAH Chile 5 SEAR/WPR China 60 AMR/PAH Colombia 4 AMR/PAH Costa Rica 3 EUR Croatia 3 EUR Cyprus 2 EUR Czech Republic 9 EUR Denmark 4 EMR/AFR Egypt 3 EUR Estonia 2 EUR Finland 7 EUR France 74 EUR Germany 109 EUR Greece 12 SEAR/WPR Hong Kong 3 EUR Hungary 6 EUR Iceland 1 SEAR/WPR India 33 EMR/AFR Iran 2 EUR Ireland 6 27 WBMT Annual Progress Report *Maximum number of teams in any one survey year 2006-2012 WHO Region Country Number of Teams EUR Israel 9 EUR Italy 98 SEAR/WPR Japan 381 EMR/AFR Jordan 1 EUR Kazakhstan 1 EUR Latvia 1 EMR/AFR Lebanon 2 EUR Lithuania 2 EUR Luxembourg 1 EUR Macedonia, FYR 1 SEAR/WPR Malaysia 10 AMR/PAH Mexico 7 EMR/AFR Morocco 1 EUR Netherlands 16 SEAR/WPR New Zealand 6 EMR/AFR Nigeria 1 EUR Norway 6 EMR/AFR Oman 1 EMR/AFR Pakistan 3 AMR/PAH Panama 3 AMR/PAH Paraguay 1 AMR/PAH Peru 1 SEAR/WPR Philippines 1 EUR Poland 18 EUR Portugal 6 EUR Romania 4 EUR Russian Federation 14 EMR/AFR Saudi Arabia 7 EUR Serbia 4 SEAR/WPR Singapore 5 EUR Slovak Republic 5 EUR Slovenia 1 EMR/AFR South Africa 7 28 WBMT Annual Progress Report *Maximum number of teams in any one survey year 2006-2012 WHO Region Country Number of Teams SEAR/WPR South Korea 43 EUR Spain 73 EUR Sweden 8 EUR Switzerland 9 SEAR/WPR Taiwan 18 SEAR/WPR Thailand 7 EMR/AFR Tunisia 1 EUR Turkey 46 EUR Ukraine 2 EUR United Kingdom 54 AMR/PAH United States of America 191 AMR/PAH Uruguay 5 AMR/PAH Venezuela 2 SEAR/WPR Vietnam 3 TOTAL 78 (77) 1607 (1533) (……..) = previous year 29 WBMT Annual Progress Report APPENDIX D: HISTORY OF BOARD MEETINGS WBMT Board Business Meetings WBMT Participant Meetings 2014 Teleconference (December) Geneva (MPHO NGO meeting; September) Teleconference (July) Milan, Italy (March) 2013 Brasilia, Brazil (WBMT/NOFITY; December) Teleconference (November) Teleconference (July) Geneva, Switzerland (WHO; May) London, UK (Standing Committees; April) Salt Lake City, UT, US (February) 2012 Atlanta, GA, USA (WBMT/LABMT; December) Rome, Italy (WBMT/NOTIFY; November) Teleconference (October) Hyderabad, India (APBMT; October) St. Petersburg, Russia (WBMT/Russia; September) Lagos, Nigeria (WBMT/AFBMT; September) Manila, Philippines (WBMT/Philippine Society of Haematology; August) Teleconference (June) Geneva, Switzerland (April) San Diego, CA, US (WBMT/LABMT; February) 2011 Teleconference (December) Teleconference (September) Rio de Janeiro, Brazil (SBTMO/LABMT; August) Teleconference (June) Teleconference (April) Paris, France (Standing Committees; March) Honolulu, HI, US* (February) 30 WBMT Annual Progress Report WBMT Board Business Meetings WBMT Participant Meetings 2010 Phuket, Thailand (APBMT; November) Vienna, Austria (March) Brussels, Belgium (WHO; February) 2009 Minneapolis, MN, US (November) New York, NY, US (UN; October) Nagoya, Japan (April) Göteborg, Sweden (March) 2008 Minneapolis, MN, US (October) Geneva, Switzerland (WHO; October) Firenze/Florence, Italy (March) Tampa, FL (February) 2007 Minneapolis, MN, US (October) Lyon, France (March) *1st elected Board meeting 31 WBMT Annual Progress Report APPENDIX E: HISTORY OF INTERNATIONAL SCIENTIFIC SYMPOSIA 2014 April, EBMT Meetings (Milan) Hematopoietic Stem Cell Trasnplantation: Access and Affordability Co-Chairs: D. Niederwieser, MD; Y. Kodera, MD; D. Confer, MD; D. Wiesdorf, MD; H. Greinix, MD Non-Government Organization (NGO): Status significance and opportunities of NGO (J. Nunez) Cost of non-transplant therapy for hematologic malignancies (J. Apperley) Alternative donor selection: o Haploidentical donor (L. Luznik) o Cord blood stem cell transplantation (M. Eapen) February, BMT Tandem Meetings (Dallas) Hematopoietic Stem Cell Trasnplantation: Access and Affordability Co-Chairs: D. Niederwieser, MD; Y. Kodera, MD; D. Confer, MD; D. Wiesdorf, MD; H. Greinix, MD Non-Government Organization (NGO): Status significance and opportunities of NGO (J. Nunez) Cost of non-transplant therapy for hematologic malignancies (J. Apperley) Alternative donor selection: o Haploidentical donor (X-J. Huang) o Cord blood stem cell transplantation (D. Wiesdorf) 2013 April, EBMT Meetings The Legacy of E. Donnall Thomas: One Million Hematopoietic Stem Cell Transplants Co-Chairs: D. Niederwieser, MD; Y. Kodera, MD; D. Confer, MD; H. Greinix, M.D. E. Donnall Thomas: From Cooperstown to Global (R. Storb) Challenges to Future Growth: The Transplant Center Perspective o Europe (M. Mohty) o Eastern Mediterranean (M. Aljurf) o Africa (N. Novitzky) Challenges to Future Growth: The Donor Registry Perspective (D. Confer) Challenges to Future Growth: The WHO Perspective (L. Noël) Improving Research Collaborations to Move Forward (M. Horowitz) 32 WBMT Annual Progress Report February, BMT Tandem Meetings The Legacy of E. Donnall Thomas: 1 Million Hematopoietic Stem Cell Transplants Co-Chairs: D. Niederwieser, MD; Y. Kodera, MD; D. Confer, MD; H. Greinix, MD E. Donnall Thomas: From Cooperstown to Global (F. Appelbaum) Challenges to Future Growth: The Transplant Center Perspective o North America (R. Champlin) o Central/South America (C. Bonfim) o Asia-Pacific (A. Srivastava) Challenges to Future Growth: The Donor Registry Perspective (D. Confer) Challenges to Future Growth: The WHO Perspective (L. Noël) Improving Research Collaborations to Move Forward (J. Apperley) 2012 WBMT Scientific Session Chair: D. Niederwieser, MD WBMT Update (D. Niederwieser) The Macroeconomics of Hematopoietic Stem Cell Transplantation (A. Gratwohl) A Global View of Cord Blood Transplantation (V. Rocha) The Fukushima Nuclear Accident – The Transplant Team Experience (S. Taniguchi) 2011 WHO and WBMT: A Model for Optimal Collaboration Between Scientists and Health Institutions Co-Chairs: D. Confer, MD; Y. Kodera, MD; and D. Niederwieser, MD Update on WBMT Activity (D. Niederwieser) Global HSCT Activity Survey 2007-2008 (H. Baldomero) Report from the APBMT Congress: HSCT Activity and Plans for a Vietnam Meeting (Y. Kodera) Harmonizing Standards in BMT – Improving Outcomes on a Global Scale (K. Loper) WHO and WBMT a Model for Optimal Collaboration Between Scientists and Health Institutions (L. Noël) 2010 Worldwide Network for Blood and Marrow Transplantation (WBMT) Session Chairs: D. Niederwieser, MD and M. Horowitz, MD, MS Update on Progress of WBMT (D. Niederwieser) Challenges in Establishing HSCT Outcomes Registries in Developing Countries AsiaPacific BMT Group (Y. Atsuta) Eastern Mediterranean BMT Group (M. Aljurf) Ethical Issues in Donation of Hematopoietic Stem Cells (A. Capron) 33 WBMT Annual Progress Report 2009 WBMT International Session (Supported by THERAKOS, Inc.) Co-Chairs: D. Niederwieser, MD; S. Davies, MD; Y. Kodera, MD; and M. Oudshoorn, PhD Overview of Unrelated Adult and Cord Blood Donation: the WMDA Annual Survey (M. Oudshoorn) Unrelated Donor Outcomes and Plans for Assessing Related Donor Outcomes: A Report from the NMDP/CIBMTR (D. Confer) Related Donor Outcomes from the Japanese Registry: The Importance of Preregistration (Y. Kodera) Proposal for an EBMT Donor Outcome Registry (J. Halter) 34 APPENDIX F: PUBLICATIONS LIST Author(s) Title Citation Credited to: Submitted in 2014 – remains under consideration Gratwohl A, Pasquini MC, Aljurf M, Atsuta Y, Baldomero H, Foeken L, Gratwohl M, Bouzas F, Confer D, Frauendorfer K, Gluckman E, Greinix H, Horowitz M, Iida M, Lipton J, Madrigal A, Mohty M, Noel L, Novitzky N, Nunez J, Oudshoorn M, Passweg J, van Rood J, Szer J, Blume K*, Appelbaum F, Kodera Y, Niederwieser D, for the Worldwide Network of Blood and Marrow Transplantation WBMT Worel N, Buser A, Greinix H T, Hägglund, H, Navarro W, Pulsipher A A, Nicoloso de Faveri G, Bengtsson M, Billen A, Espino G, Fechter M, Giudice V, Hölig K, Kanamori H, Kodera Y, Netelenbos T, Niederwieser D, van Walraven S M, Rocha V, Vergueiro C, Weisdorf D, Yabe H, Halter J P Hematopoietic stem cells: lessons from the journey to one million transplants Suitability criteria for related donors with disorders affecting the immune or endocrine system, metabolism, skin, musculoskeletal, neurologic and psychiatric health, and woman health issues: A consensus statement from the Worldwide Network for Blood and Marrow Transplantation (WBMT) standing committee on donor issues (part III) Worel N, Buser A, Greinix H T, Hägglund, Suitability criteria for related donors with H, Navarro W, Pulsipher A A, Nicoloso de disorders of the lung, gastro‐ intestine, Faveri G, Bengtsson M, Billen A, Espino G, liver, spleen, biliary tract, pancreas, kidney, Fechter M, Giudice V, Hölig K, Kanamori H, genitourinary tract, heart, vascular system, eye, blood and malignancies: A consensus Kodera Y, Netelenbos T, Niederwieser D, van Walraven S M, Rocha V, Vergueiro C, statement from the Worldwide Network for Weisdorf D, Yabe H, Halter J P Blood and Marrow Transplantation (WBMT) standing committee on Donor Issues (part ll) 35 Submitted to The Lancet Haematology (Reference number: THELANCETHAEMATOLOGY‐D‐14‐ 00101R1) WBMT Submitted to Bone Marrow Transplantation (Reference number: BMT‐2014‐1062) WBMT Donor Issues Standing Committee Submitted to Bone Marrow Transplantation (Reference number: BMT‐2014‐1055) WBMT Donor Issues Standing Committee Author(s) Worel N, Buser A, Greinix H T, Hägglund, H, Navarro W, Pulsipher A A, Nicoloso de Faveri G, Bengtsson M, Billen A, Espino G, Fechter M, Giudice V, Hölig K, Kanamori H, Kodera Y, Netelenbos T, Niederwieser D, van Walraven S M, Rocha V, Vergueiro C, Weisdorf D, Yabe H, Halter J P Title Citation General considerations for related stem cell Submitted to Bone Marrow Transplantation (Reference number donors: A consensus statement from the Worldwide Network for Blood and Marrow BMT‐2014‐1054) Transplantation (WBMT) standing committee on Donor Issues. (part I) Credited to: WBMT Donor Issues Standing Committee Published in 2014 Celluzzi CM, Keever‐Taylor C, Alurf M, Koh K, Rabe F, Rebulla P, Sacchi N, Sanders J, McGrath E, Loper, K on behalf of The Alliance for Harmonisation of Cellular Therapy Accreditation (AHCTA) Aljurf M, Rizzo J D, Mohty M, Hussain F, Madrigal A, Pasquini MC, Passweg J, Chaudhri N, Ghavamzadeh A, El Solh H, Atsuta Y, Szer J, Kodera Y, Niederweiser D, Gratwohl A, Horowitz MM Leemhuis T, Padley D, Keever‐Taylor C, Niederwieser D, Teshima T, Lanza F, Chabannon C, Szabolcs P, Bazarbachi A, Koh, M Training Practices of HPC(A) and HPC(CB) Collection Staff: Analysis of a Survey by the Alliance for Harmonisation of Cellular Therapy Accreditation Challenges and Opportunities for HSCT Outcome Registries; Perspective from International HSCT Registries Experts Minimal Requirements and Essential Features for Setting up a Stem Cell Processing Laboratory Transfusion (2014) Vol 54, Issue 12, 3138‐3144 ;[Epub 2014 May] WBMT Regulation and Accreditation Committee (AHCTA) Bone Marrow Transplantation (2014), WBMT 1–6 [Epub 2014 April 28] Transplant Center and Recipient Committee Bone Marrow Transplantation (2014) WBMT Graft 49, 1098–1105; [Epub 2014 June 16] Processing Committee Published in 2013 Niederwieser D for the Worldwide Network for Blood and Marrow Transplantation One Millionth Blood Stem Cell Transplant Rev Hematol Mex 2013;14:84‐85 Marks Major Medical Milestone: International Cooperation Among Physicians, Scientists Credited for Landmark Achievement 36 WBMT Author(s) Gratwohl A, Baldomero H, Gratwohl M, Aljurf M, Bouzas L, Horowitz M, Kodera Y, Lipton J, Iida M, Pasquini M, Passweg J, Szer J, Madrigal A, Frauendorfer K, Niederwieser D Halter JP, van Walraven SM, Worel N, Bengtsson M, Hägglund H, Nicoloso de Faveri G, Shaw BE, Schmidt AH, Fechter M, Madrigal A, Szer J, Aljurf MD, Weisdorf D, Horowitz MM, Greinix H, Niederwieser D, Gratwohl A, Kodera Y, Confer D Title Quantitative and qualitative differences in use and trends of hematopoietic stem cell transplantation: a Global Observational Study. Allogeneic hematopoietic stem cell donation—standardized assessment of donor outcome data: A consensus statement from the Worldwide Network for Blood and Marrow Transplantation (WBMT) Citation Haematologica. 2013 Aug;98(8):1282‐ 90. doi: 10.3324/haematol.2012.076349. [Epub 2013 Mar 18] Credited to: WBMT Bone Marrow Transplant. 2013 48, 220–225; doi:10.1038/bmt.2012.119; [Epub 2012 July 09]. WBMT Donor Safety Committee JAMA. 2010; 303(16):1617‐1624. doi:10.1001/jama.2010.491. WBMT Haematologica 2009; 94:94‐101. doi: 10.3324/haematol.13668 WBMT Donor Safety Committee Published in 2010 Gratwohl G, Baldomero H, Aljurf M, Hematopoietic stem cell transplantation; a Pasquini M, Bouzas L, Yoshimi A, Szer J, global perspective Lipton L, Schwendener A, Gratwohl M, Frauendorfer K, Niederwieser D, Horowitz M, Kodera Y, for the Worldwide Network of Blood and Marrow Transplantation Published in 2009 Halter J, Kodera Y, Urbano Ispizua A, Severe events in donors after allogeneic Greinix HT, Schmitz N, Favre G, Baldomero hematopoietic stem cell donation. H, Niederwieser D, Apperley JF, and Gratwohl A, for the European Group for Blood and Marrow Transplantation (EBMT) activity survey office 37 WBMT Annual Progress Report APPENDIX G: TERMS AND ABBREVIATIONS Term / Abbreviation AABB ABMTRR AFBMT AHCTA APBMT ASBMT ASH BIG V&S SARE BM BMDW CB CIBMTR CME CNT EBMT EDQM EHA ELN ESH FACT GODT FAQs GTCN HPC HSCT ICCBBA ISBT ISCT LABMT MCI MPHO NGO NIHBT NMDP ONT Definition AABB; formerly known as American Association of Blood Banks Australasian Bone Marrow Transplant Recipient Registry African Blood and Marrow Transplant Group Alliance for the Harmonization of Cellular Therapy Accreditation Asia-Pacific Blood and Marrow Transplantation Group American Society for Blood and Marrow Transplantation American Society of Hematology Bologna Initiative for Global Vigilance and Surveillance of Adverse Reactions and Events bone marrow Bone Marrow Donors Worldwide cord blood Center for International Blood and Marrow Transplant Research continuing medical education Italian National Transplant Centre European Blood and Marrow Transplantation Group European Directorate for the Quality of Medicines & HealthCare European Hematology Association European Leukemia Network European School of Haematology Foundation for Accreditation of Cellular Therapy Global Observatory on Donation and Transplantation Frequently Asked Questions global transplant center number human progenitor cells hematopoietic stem cell transplantation International Council for Commonality in Blood Banking Automation International Society of Blood Transfusion International Society of Cellular Therapy Latin American Blood and Marrow Transplant Society MCI Suisse SA, a professional congress organizer medical products of human origin Non-government Organization National Institute of Hematology and Bone Marrow Transplantation National Marrow Donor Program Organización Nacional de Transplantes 38 WBMT Annual Progress Report Term / Abbreviation PB PBSC RITN SBMTO SOHO V&S TAS UN WBMT WHO WMDA Definition peripheral blood peripheral blood stem cells Radiation Injury Treatment Network Sociedade Brasileira de Transplante de Medula Óssea Vigilance and Surveillance of Substances of Human Origin Transplant Activity Survey United Nations Worldwide Network for Blood and Marrow Transplantation World Health Organization World Marrow Donor Association 39