SGA grant proposal year 3 to 5 for ERN RITA.

ended

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.