Updated: Feb 1, 97
EMDIS

European Marrow Donor Information System

Project Code: A2006 Project value: 2646 KECU EC contribution: 1295 KECU No of partners: 3 No of countries: 3 Duration: 42 months

Contact Prof. Colette Raffoux France Greffe Et Moelle Hosp. Saint-Louis 1 Av. Claude Vellefaux F-75010 Paris, France Tel.: +33-1-42.49.40.70 Fax: +33-1-48.03.02.02

EMDIS aimed at reducing the waiting time for the EU registered patients needing a bone marrow transplant, also augmenting their expectancies of life, independently of their origin countries, by means of networking Distributed Data Bases. The dfinition of EU standards and common ethical rules and procedures to the access to the Network, were also define. The social challenge was to give to every patient the equity and the chance to find in the EC a suitable fully identical-HLA volunteer donor as quikcly as possible, as before only 1/3 of patients could found quickly a family donor. Actually, 2/3 of patients must undertake the long unrelated-donor search process, knowing that the waiting time between the diagnosis and the transplantation is a crucial factor, and the average chance of finding a donor by the existing systems is one in a million. Other economic, industrial and technical challenges were also addressed, including: security and confidentiality of the exchanged clinical/personal data, security of the network, excluding access to non-authorised would-be users, and procedures.

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