The Rare Immunodeficiency, Autoinflammatory and Autoimmune Disease Network is dedicated to bring together concerted efforts from the leading European centres and existing scientific networks for primary immunodeficiency disorders (PID), secondary and acquired immunodeficiency disorders (SAID), vasculitis and paediatric rheumatic diseases. 24 core centres and >100 potential affiliate centres are involved to improve patient care across Europe using complex diagnostic evaluation and highly specialised cutting edge therapies. Following our motto “from rare care to frequent cure”, this network aims to facilitate access to better and safer healthcare for EU citizens. We will bring up the weakest countries to the level of the highest and thus contribute to the reduction of inequalities within EU Member States. Together with patient groups and other stakeholders including European societies and combining our clinical and research expertise with e-Health tools, we will develop high standards of clinical care. We will enable centres of excellence to drive interdisciplinary clinical research to facilitate recent rapid advances in molecular genetics to be available for patients across Europe. The ERN RITA network will enable, for the first time, systematic and long-term cross-fertilization of historically distinct initiatives. This will encourage equality of healthcare provision for rare disease patients all over Europe.
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SGA proposal year 3 to 5 for ERN RITA.
The overall goal of the ERN RITA is to improve access to high-quality healthcare for patients. To ensure adequate and efficient use of the core service platforms, i.e. the European Reference Networks Collaborative Platform (ECP) and the Clinical Patient Management System (CPMS), an established IT working group focuses on setting up these IT platforms. The developing IT tools are dedicated to e-learning, telemedicine and teleconsultation in order to guarantee the improvement in diagnosis and treatment of rare or low prevalence complex diseases across national borders of European Member States by sharing expertise in complex clinical cases. An Operational Helpdesk, set up by an additional grant and adjusted to the specific needs of ERN RITA, will work in close collaboration with the IT Working Party.
The informed consent form from the EC is in line with the European data protection standard to share health data within the ERNs to develop diagnoses and care plans. All HCPs need to check the provided consent form with their national or local authorities’ practices and combine the consent form with local standards if necessary. In most countries this is already done. The consent form and guidelines are available in the CPMS. These have been crafted with the GDPR in mind and has been considered a best-practice by the European Data Protection Supervisor (EDPS). It complies with the general data protection requirements in EU data protection law for consent.

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