Translation of "Spécialiste des bases de données " (French → English) :

58. Calls on the Commission to cooperate with the various international organisations and support the development of an academic network of Roma experts which would provide scientific data and support, through research, analysis, the accumulation of evidence and the drafting of recommendations, in order to analyse the issues related to the integration of the Roma question, decide agendas, describe Roma issues with due seriousness on the basis of the summary reports drawn up by those organisations, and draw up an overall EU assessment at least every two years;

58. Calls on the Commission to cooperate with the various international organisations and support the development of an academic network of Roma experts that would provide scientific data and support, through research, analysis, the accumulation of evidence and the drafting of recommendations, in order to analyse the issues related to the integration of the Roma question, decide agendas, describe Roma issues with due seriousness on the basis of the summary reports drawn up by those organisations, and draw up an overall EU assessment at least every two years;

Despite the fact that data can be transmitted only on the basis of agreements signed by both parties which are checked by data protection specialists, it is not known what is happening in reality with this data when they are transmitted and if relevant agreements are really or adequately implemented.

Investments in research, promotional campaigns to make the available services and information public, improving the Community computer system regarding market access, interconnecting the specific databases and training specialists who would support the European companies should be part of the Commission’s partnership with the Member States and the European companies.

Besides different ways to access data and databases on the basis of the principle of equivalent access, another option to make existing data and data bases better accessible is by networking them or creating central databases.

- Electronic online-services developed by Orphanet and by other EU funded projects, are a clear demonstration of how Information and Communication Technology (ICT) can contribute to putting patients in contact with other patients and developing patient communities, to sharing databases between research groups, to collecting data for clinical research, to registering patients willing to participate in clinical research, and to submitting cases to experts which improve the quality of diagnoses and treatment.