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The World Marrow Donor Association (WMDA) was created in 1988.1,2,3 Allogeneic transplantation had then been an important treatment method for many hematological disorders for more than 20 years.4,5 Transplantation was originally performed with marrow from HLA-matched sibling donors, but several attempts were made before 1988 to use unrelated donors.6 This could be done since in the UK the Anthony Nolan Trust had pioneered the establishment of a registry of volunteer bone marrow donors. Results of transplantation with marrow from such HLA-matched unrelated donors were at this time relatively poor. However, many patients without other treatment options still received marrow from these donors, for example patients with chronic myelocytic leukemia. Slowly, results improved and this was the incentive for other countries to set up similar registries. The need for a forum for discussions and joint activities was obvious. This was the background for creating the WMDA. On the initiative of Professor John Goldman, the first Secretary of the organization, the few registries that existed at this time joined in WMDA, primarily to facilitate the transfer of hematopoietic cells from unrelated donors across international borders.1,2,7

Although the original goal is still to ‘facilitate efficient, timely, and reliable transfer of marrow and other forms of hematopoietic stem cells collected from healthy volunteer residents in one country for transplantation of patients resident in other countries’ as written in the by-laws, numerous other goals have been added, such as establishing guidelines on ethical, technical, medical, and financial issues that concern the donor and donor-cell transfer.8,9

WMDA today is a worldwide organization. It has a President and President-Elect, a Secretary General, a Chief Operating Officer, a Treasurer, three Vice-Presidents and three secretaries for North and South America, Australia and the Pacific, and Europe and Africa, respectively.

The most important work is performed in the Leiden Central Office, led by the Chief Operating officer and by the Working Groups. Each Working Group has an elected chairperson, one or two vice chairs and members recruited by the chairperson. Their work is summarized below.

The Donor Registries Working Group gives guidelines on donor release, donor confidentiality, and how to speed up the search process. It also deals with all kinds of logistics of bone marrow and hematopoietic stem cell transfer and with measures to recruit donors. It is also responsible for collecting information about the activities of the registries. This is the basis for the annual report of registries that is published every year by the WMDA.

The Quality Assurance Working Group (QAWG) deals with the quality of the search process. Typical issues for the QAWG are the HLA nomenclature and search algorithms, the quality control of HLA typing, how to interpret HLA-typing data,8,10,11,12 the safety of data entry, the quality of the data, and legal issues, which frequently differ between countries. QAWG tries to harmonize the view on legal issues and gives recommendations about how to harmonize national and international laws related to the international transfer of cells.

The Ethics Working Group tries to harmonize and give guidelines on ethical issues,13,14,15 particularly those related to donor recruitment, information, evaluation, workup and consent, for example, how to inform donors about procedures such as repeated harvests, new requests for donor lymphocytes and adverse effects, particularly those related to G-CSF treatment. It also deals with issues that relates to controversies between transplant centers and donor safety.

The Financial Working Group deals with the budget together with the Treasurer. It also tries to estimate and harmonize the costs for different procedures from search to transplant. It deals with issues related to competition between registries and how to handle those issues practically and legally. The group is also engaged in the difficult question of insurance coverage.

The Clinical Working Group tries to bridge between registries, donor centers, and transplant centers. It tries to help in sorting out differences in opinion between the transplant center and the registry concerning the indications when to request unrelated donors. It mainly works by giving guidelines on these issues and formulating principles. In addition, the Clinical Working Group can give guidelines concerning clinical issues to individual registries and donor centers when required. A very important recent function of the Clinical Working Group is overseeing the activities of a committee documenting serious adverse reactions (SEAR).

Recently, WMDA created an Accreditation Committee. The goal is to start to accredit registries and donor centers. This would mean a quality stamp for those registries and donor centers that have passed the requirements for being accredited. This process is in its infancy and has just been on trial. So far, WMDA has resources only for accrediting a limited number of centers every year, and therefore it is important to know that most – presently all – nonaccredited centers have not yet had the chance to enter the accreditation process. It is important to state that the aim with the accreditation process is to support the registries in their work to improve quality of all processes, and not to be an obstacle to their important work.

WMDA collaborates with several other organizations, in particular with NetCord. WMDA has agreed with NetCord, which is an organization to facilitate cord-blood stem-cell transfer, donation and storage, that accreditation of cord-blood centers should be performed by NetCord. NetCord and WMDA have decided to exchange board members mutually in order to facilitate collaboration between these two organizations. WMDA collaborates with other organizations, such as the European Group for Blood and Marrow Transplantation (EBMT) and other transplant organizations throughout the world.

The activities of the WMDA registries are summarized in the Annual Reports16,17 of the organization. According to the latest report (2002) summarizing data up to the end of 2001, there are now 52 registries throughout the world that report their activities to WMDA. There are more than 7.5 million registered volunteer donors in these registries (Table 1). As can be seen from Table 2, the total number of donations (approximately the same as transplantations) in 2001 was 4917. This is an increase of 275. The increase is entirely because of an increase in peripheral blood stem cell (PBSC) donations, while bone marrow donations are decreasing slowly. This trend has been seen for some years and will probably be even more accentuated during the years to come. For most disorders, PBSC transplantation appears to be as efficacious as bone marrow transplantation.18 However, for some disorders, for example multiple myeloma, bone marrow transplantation may still be the first choice.19,20 PBSC transplantation is associated with an increased risk of chronic graft-versus-host disease, but may have other advantages, such as in some disorders a lower relapse rate. For the donor, it seems advantageous to donate PBSC since general anesthesia is not required. However, data thus far are not good enough to know whether there is a difference in donor safety with one or the other method. One goal for WMDA is to collect data on donor complications and adverse events with these two different methods of donation.

Table 1 Registries and donors at the end of 2001
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Table 2 Total donations
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Table 3 illustrates the number of donations related to the number of donors in the registry for four selected registries with the highest efficiency of donor utilization. It shows that small countries with small registries like The Netherlands, Switzerland, and Finland can be relatively efficient in utilizing their donors as compared to very large registries like those in the UK, Germany, and the US. Table 4 illustrates the number of donations exported to other countries related to the size. Overall, about one-third of the donations are exported. Table 4 also shows that some smaller countries export a higher percentage of their donations than the countries with large registries, for example the UK, Germany, and the US. The figures should be taken with caution, and many factors are at work to explain them, for example the degree of homogeneity of the population, etc.

Table 3 Percentage of blood or marrow stem-cell donations in relation to the number of donors in 2001 for selected countries
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Table 4 Percentage of blood or marrow stem-cell donations exported in relation to the number of donors in 2001 for selected countries
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Table 5 illustrates activity in the cord-blood area. The number of cord-blood units stored in banks has more than doubled between 1999 and 2001, and the number of banks has increased from 19 to 33.17

Table 5 Cord blood banks 1999–2001
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WMDA is mainly an organization for the registries of unrelated volunteer donors, but there are also other possibilities for membership in the organization. There are the following three different types of memberships:

(1) Organizational membership: This membership is open to any organization, which has the objective to coordinate on a national level the provision of hematopoietic stem cells internationally for transplantation. These members are always national registries. Each organizational member will designate one individual to serve as a WMDA representative and this individual is eligible to vote on behalf of its organization. Application for full organizational membership should be submitted to the WMDA office for review and approval by the Board.

(2) Non-voting organizational membership: This membership is open to any credible volunteer professional or commercial organization interested in promoting the WMDA objectives but is not directly involved in providing hematopoietic stem cells for transplantation. Applications for nonvoting organizational membership are submitted in the same way as applications for organizational membership.

(3) Individual corresponding membership (general membership): This membership is open to clinicians, scientists, and others with an interest in hematopoietic stem cell transplantation. This kind of membership does not convey voting privileges in WMDA. The individual corresponding members may participate in WMDA working groups and in nomination of individuals to WMDA officer positions. Applications are submitted to the WMDA office similar to other membership applications.

WMDA convenes twice yearly, usually alternatively in association with the annual National Marrow Donor Program (NMDP) Meeting in the US and the annual meeting of the European Group for Blood and Marrow Transplantation (EBMT) in Europe. The two meetings should take place on different continents of the world. WMDA also organizes every other year a donor registries meeting, usually for 2–3 days, in order to update WMDA members on current activities in the field of donation and transplantation. Scientific, legal, and financial issues are discussed and new ideas to facilitate transfer of stem cells, to improve the quality of the registries, and to safeguard the donor, all with the final goal to provide high-quality stem cells to the benefit of the patient who needs them.

Current information about WMDA and its activities can be visited on the website of WMDA (www.worldmarrow.org).