Project name: ERN RITA 2023-2027

Project start date: 1. 10. 2023
Project completion date: 30. 9. 2027
Project Budget: Total EUR 3,224,985, of which EUR 293,107 for VFN
Project guarantor: Clinic of Pediatrics and Hereditary Disorders of Metabolism (KPDMP), principal researcher prof. MD Pavla Doležalová, CSc.
Project Registration Number: 101155878

Project brief:

The project is supported by the EU4Health program under Direct Grants to European Reference Networks (ERN) to support the coordination, management and operational activities of rare diseases. ERN RITA brings together European centers with expertise in 4 areas of rare and complex immune diseases: primary immunodeficiencies, autoimmune, autoinflammatory and pediatric rheumatic diseases. VFN participates in the project as a partner of the University Medical Center Utrecht - ERN RITA coordinator. With its activities, the project builds on previous European grants implemented at KPDPM in 2019-2023.

During this project, for all 4 groups of these rare diseases, ERN RITA will continue to develop educational activities, create recommendations for clinical practice, the ERN RITA registry, research collaboration and training for users of the Clinical Patient Management System platform for patients with rare diseases (Clinical Patient Management System - CPMS).

The activities will take place in collaboration with hospitals, patients and patient representatives, professional societies and other associated entities involved in the relevant professional areas. The priority will be the transfer of knowledge and professional training to member states that do not have a sufficient level of expertise.

Abstract in English:

The European Reference Network (ERN) for rare immunological diseases and complex conditions (ERN RITA) brings together the leading European centers with expertise in diagnosis and treatment of rare primary immunodeficiency, autoimmune, autoinflammatory and pediatric rheumatic disorders, setting the stage for high standards of clinical care throughout Europe enabling centers of excellence to drive forward this pan-European initiative. ERN RITA consists of four disease streams. Focusing on clinical excellence, we will ensure continuity of care from childhood throughout the lifespan of the patient: Stream 1: primary immunodeficiencies Stream 2: autoimmune diseases Stream 3: autoinflammatory disorders Stream 4: pediatric rheumatic disorders During this project and for all 4 disease streams , ERN RITA will continue and expand Educational activities, clinical practice guidelines development, the ERN RITA registry, research collaborations and CPMS trainings and CPMS panels. Activities will be developed and carried out in collaboration with health care providers, patients and patient representatives, scientific societies and other affiliated stakeholders, all involved in the relevant disease areas. A priority will be transferring knowledge and training to Member States with less expertise.