Project title: ERN RITA Helpdesk, Monitoring and IT / eHealth activities

Project start date: 1. 6. 2021
Project completion date: 30. 11. 2022
Project budget: a total of EUR 279 484, of which EUR 149 800 for the VFN,
mandatory co-financing from own resources of 25% will be partially provided by the project coordinator
Project guarantor (department): Department of Pediatrics and Inherited Metabolic Disorders
Project registration number: INEA / CEF / ICT / A2020 / 2373343

Project brief:

The project is supported under the CEF TELECOM 2020 call of the Connecting Europe Facility (CEF) program - the area of the trans-European telecommunications network managed by the European Health and Digital Executive Agency (HaDEA).

VFN participates in the project as the only co-beneficiary, the main researcher in the Czech Republic is prof. MUDr. Pavla Dolezalova, CSc. from the Department of Pediatrics and Inherited Metabolic Disorders. The project coordinator is Utrecht University Medical Center in the Netherlands.

This is a follow-up grant project "ERN RITA Helpdesk - development of activities supporting clinical services ”, which KDDL successfully implemented from October 2019 and until March 2021. The aim of the project is technical support for the involvement of VFN in European reference networks for rare diseases (specifically ERN RITA). The main aim is to promote interoperability in order to improve the quality of care for patients with rare diseases in Europe. The specific activities of the project are as follows:

• Continuation of the established activities of the ERN RITA Helpdesk in terms of technical support for the use of electronic platforms managed by DG Sante and training of the staff of the ERN RITA centers in their use
• Cooperation of RITA Helpdesk on the creation of a data file and optimization of its online input for the purpose of ERN monitoring according to the requirements of the European Commission
• Development of an e-learning system in the field of ERN RITA disease
• Formulation of specific requirements for the adaptation of the electronic CPMS platform according to the needs of individual disease groups, development of registers of rare diseases managed by ERN RITA, revision of the Orphanet nomenclature

Helpdesk staff will be available for the entire ERN RITA membership base (currently 24 partners from 10 EU Member States) and other affiliated healthcare providers from other European countries (for more see ERN RITA website).