MERITA project: a metadata registry for the ERN RITA

Project start date: 1. 5. 2020
Project completion date: 30. 4. 2023
Project Budget: a total of EUR 261,187, of which EUR 24,912 for the VFN
mandatory co-financing from own resources of 30%
Project guarantor (workplace): Department of Pediatrics and Inherited Metabolic Disorders, Center for Pediatric Rheumatology and Autoinflammatory Diseases
Project Registration Number: 947180 - MERITA

Project brief:

The project is supported under the 3rd EU Health Program, CHAFEA (Call HP-PJ-2019).

VFN participates in the project within a nine-member consortium within ERN RITA, 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 Clinica Pediatrica e Rheumatologia, IRCCS, Istituto Giannina Gaslini (IGG) from Italy.

The aim of the project is to interconnect the existing European registries of rare immune diseases belonging to ERN RITA on one common platform, which would ensure their interoperability and comprehensive reporting of the basic set of clinical data proposed by the European Commission (European Commission Joint Research Center).

The project will last 36 months and will include the following main objectives:

1. Registration of individual registers in the European Directory of Registries (ERDRI)
2. Creating a metregister by importing a common data file (Common Data Elements, CDE)
3. Conference on the extension of the set of collected data by other common elements

As a member of the "MERITA Registry" team, the ERN-RITA team is one of the 3 co-investigators of the main subproject, work package 5 (WP.5) - MERITA-R, which has the task of creating the overall design of the MERITA registry and importing data from other registers.