European Bone Marrow Donor Registries: Collaboration and Individualism

Summary

The first registry of HLA-typed volunteer bone marrow donors made available for patients residing abroad was The Anthony Nolan Bone Marrow Trust founded in 1974 in London, England. Several years passed before other countries established registries. Later, because of the growing number of donors and need to facilitate donor search processes and tracking, the European Bone Marrow Transplantation Group (EBMT) took the initiative to established Bone Marrow Donors Worldwide (BMDW), and BMDW was generated in 1988 in Leiden, The Netherlands, under the auspices of the Europdonor Foundation. As of November 25, 1998, there are 5.4 million donors in BMDW from 59 registries and cord blood banks in 34 countries. 2.1 million donors, of whom 39% are AB- and DR typed, are from 43 registries and cord blood banks in 25 European countries. In Europe, search processes, donor activation, and confirmatory typing requests take place either through telematic systems (EDS, developed by France Greffe de Moelle in Paris, France, or EMDIS, initially developed by registries in England, France, and Germany) or by direct communication. The large number of individual registries and multiple transplant centers across Europe underlines the need for a common telematic system. Today, several registries have to be addressed in a unique way to order certain services, some services may not be available, and reporting modes vary. Individual policies, varying resources, and national regulations make it a great challenge to integrate registries and transplant centers into a common system. On the other hand, the current “open” system allows a high degree of flexibility and individual service, which for instance may ease final donor workup and (re)transplantation planning in complicated or urgent settings.