Rare diseases affect no more than 1 person in 2000, however collectively they affect 30 million people in the EU. In the area of rare diseases, knowledge exchange and research within the EU and international collaboration is indispensable.
For this purpose, under the EU directive 2011/24/EU on cross-border healthcare the European Commission and the EU Member States have jointly installed European Reference Networks (ERNs) for rare diseases. The mission of the ERNs includes the better sharing across borders of existing knowledge on rare diseases and generation of new knowledge on rare diseases and complex procedures, as stated in the EU directive 2011/24/EU.
The aim of the European Rare Disease Research Coordination and Support Action consortium (ERICA), in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
The overall objective of ERICA is to increase the research and innovation potential of ERNs through facilitating inter-ERN collaboration and increase the visibility and impact of ERNs through outreach to and collaboration with multiple stakeholders.
Through knowledge sharing, engagement with stakeholders in the rare disease domain and assembly of transdisciplinary research groups working across the global health spectrum, ERICA strives to reach the following goals:
• new intra- and inter-ERN rare disease competitive networks;
• effective data collection strategies;
• better patient involvement;
• enhanced quality and impact of clinical trials;
• increased awareness of ERNs innovation potential.
ERICA will strengthen research and innovation capacity by integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact, and innovation. This will result in efficient access and safe therapies for the benefit of patients suffering from rare diseases and complex conditions.
The overall objective of ERICA is to increase the research and innovation potential of ERNs through facilitating inter-ERN collaboration and increase the visibility and impact of ERNs through outreach to and collaboration with multiple stakeholders. All endeavors will be in close agreement and collaboration with all other European initiatives on rare diseases where the focus will be to enhance synergy.
The following specific objectives are followed and designed, based on the results of the survey and to support the overall objective:
• Objective 1: Record, coordinate, and disseminate ERN clinical research activities in line with ERICA’s strategic positioning (WP1, WP6)
• Objective 2: Facilitate collection, sharing and analysis of clinical research data within and between ERNs (WP2, WP4)
• Objective 3: Advance patient-centred research and outcomes monitoring by promoting the identification and application of patient-centred outcome measures for rare diseases (WP3)
• Objective 4: Map, integrate and link ongoing activities with regards to facilitating Europe-wide multicentre clinical trials (WP4)
• Objective 5: Encourage methodology sharing and increase the innovation potential of ERNs (WP4, WP5)
