Evaluation of European rare disease networks

Europe

IDOM, together with the Andalusian Health Quality Agency (ACSA), is leading the project for the analysis and evaluation of the European Reference Networks for the care of rare diseases (ERNs). This European Commission initiative includes more than 24 Networks and 834 clinical units distributed in 261 hospitals in the Member States.

Currently, more than 30 million people suffer from a rare disease in the European Union, so support for research into rare diseases is key to developing appropriate treatments, protocols and facilitating patients’ living conditions.

European Reference Networks for Rare Diseases (ERNs) are structures within the framework of the European Union (EU) Directive on patients’ rights in cross-border care and aim at research, exchange of knowledge and coordination of care for rare diseases in citizens of different member countries, ensuring the availability of the necessary treatments regardless of the patient’s origin.

The IDOM-ACSA consortium carries out the following tasks within the project:

• Development of the Recruitment and training of 186 assessors of 20 different nationalities to assess ERNs and HCPs belonging to these networks.
• Elaboration of the review and development of the methodology to complete and refine the evaluation process.
• Development of support and advisory functions for evaluators and HCPs regarding the evaluation process through online platforms (Helpdesk, OEIT).
• Development of support guides and briefing seminars for evaluators and HCPs on the evaluation process.
• Development and management of ACSA’s IT team for technical issues related to the platform.
• Elaboration of audit monitoring and support plan.
• Review and analysis of data collected.
• Elaboration of conclusions.
• Development of communications with the European Commission

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