If the patient has no suitable family donor available, then the only alternative is an unrelated donor. For locating a suitable donor large registries have been formed in different countries, coordinated by international organizations, for example the Bone Marrow Donor Worldwide (BMDW), collecting the HLA phenotypes of volunteer hematopoietic stem cells donors and cord blood units from 37 countries; on 4 June 2002 the number of unrelated donors and umbilical cord blood units was 7877328.

HLA antigens significantly differ in frequency among populations; thus, it is of common interest that various ethnic groups must be well represented. Therefore, each country needs to develop its own registry. In Central Europe such registries are either absent or evolving. The task of STEMNET is to integrate the CE registries in European networks and to support the participation of national networks in BMDW and other international activities. Thereby, this project will contribute to better therapy in Central Europe and by introduction of new ethnic groups for better chances of patients worldwide.

The operation of registries requires the use of modern communication technology for the exchange of data with international and local BM donor organisations and networks. An on-line link-up to the international registry BMDW allows immediate search for unrelated stem cells from a worldwide database. This project should support best practice of Information Technology (IT) at national level and integration into European networks dealing with stem cell transplantation for patients with various diagnoses, mostly leukaemia.

International communication and cooperation between participants requires, that a uniform nomenclature for factors of the HLA system must be in use for all HLA typing and selection procedures as well as for the transfer of HLA information. The main goal of the STEMNET project is to implement electronic manipulation for the above-mentioned functions in conformity with the WHO HLA Nomenclature, which is accepted also by European Federation for Immunogenetics (EFI) and applied by the world register BMDW.

Standard operation procedures (SOPs) used within the individual registries are to be inventoried and compared with those of BMDW and WMDA (Word Marrow Donor Association) in order to reach a maximum uniformity, at the same time leaving the space for operations needed by specific domestic situations and duties. Functioning of the registry has to match up with the European regulatory frame for both human cells transplantation and personal data handling and security aspects. Sharing of European standards for good laboratory practice, quality control and high-level HLA typing procedures will be introduced as well.

In order to meet the requirements of the common European standards, an inspection methodology is used with respect to privacy as well as conformity to the WMDA and EFI standards by expert reviewers from Austria, Germany and The Netherlands.

Up to now the participating stem cell registries at the individual centres have been developed in various stages. STEMNET is dealing with three "major" centres (Budapest, Prague and Wroclaw) with fully developed and functional registries and search centres, while in Ljubljana and Bratislava they are in the initial phases, and in Vilnius the register was not yet fully established.

Results

In Lithuania hematopoietic stem cells transplantation is being performed in Vilnius University Santariskes Hospital for adults since 1999; in year 2002 transplantation unit for children in Santariskes Children Hospital was opened. In the Laboratory of Clinical immunology, Vilnius University Santariskes Hospital, primary and control typing of patients and their families for allogeneic hematopoietic stem cells transplantations are performed; a phenotypically identical donor is provided in about 35 % of cases.

So far hematopoietic stem cells transplantations using unrelated donors both for adults and children in Lithuania are not performed; unrelated bone marrow transplantations for inhabitants of Lithuania are performed abroad after finding suitable donors in BMDW.

Thereby, STEMNET will contribute to the creation of a voluntary unrelated bone marrow donor registry in Vilnius, by introduction of a new ethnic group will facilitate in finding a donor for recipients in need, giving a better chances for patients in the country and worldwide.

Consortium


Project co-ordinator:
Ir. Henk G.M. van der Zanden, Europdonor Foundation, Leiden, The Netherlands