Searching Hematopoietic Stem Cell Donors (3/8/2008)

On three continents, 17 registries are connected by the computer network, European Marrow Donor Information System (EMDIS) in order to facilitate the donor search for the life saving transplantation of hematopoietic stem cells mostly for leukemia patients. The EMDIS allows all connected registries the fast and seamless access to relevant data of over 80% of the 11.4 million hematopoietic stem cell donors registered world-wide today. The transplantation of these stem cells is often the last chance for life for leukemia patients. The national and, where required, international search process for a suitable hematopoietic stem cell donor is extremely complex and demands close cooperation of all institutions involved.

Cooperation of German Central Marrow Donor Register (ZKRD), the Anthony Nolan Trust (London) and France Greffe de Moelle (Paris) led to EMDIS creation in order to improve the efficiency and speed of donor searches using modern technology. Henceworth ZKRD has been playing a leading role in creating the technical design of EMDIS and carrying it forward by implementation and connection of new partner registries. Beyond European partners in Belgium, France, United Kingdom, Italy, Norway, Austria, Sweden, Switzerland, Spain, and Chech Republic, EMDIS has integrated three registries in the United States in recent years and now even in Australia. EMDIS was funded by the European Union in the first three years and became a success story. In the meantime it efficiently supports a very complex system of care for critically ill patients far beyond Europe. Before long, Canada and the Asian Taiwan shall be affiliated.

The impact of the information system is revealed by the stem cells harvests conducted in Germany in 2006: More than 60% of the 3,039 stem cell products and the over 100,000 preparatory services provided through ZKRD were carried out for international patients, making Germany the export champion. And for the majority of those international patients the donor was found over EMDIS.

EMDIS is basically an asynchronous communication protocol between heterogeneous databases. It is based upon the message exchange in a self describing text format. The data exchange is accomplished by encrypted emails, in which an extra communication layer with sequence numbers guarantees secure, complete and fault tolerant data transmission. The participation in the platform independent network is free of charge for the registries. The necessary software tools are also provided to the members for free. However, the interface to the national registry software has to be implemented by an IT expert of the particular registry applying those tools.

Note: This story has been adapted from a news release issued by the European Society for Medical Oncology

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