Registry Format

The MeRITA Registry is the direct expression of the Working Group on Registries and Biobanks of the European Reference Network of Rare Immunodeficiency, AutoInflammatory and AutoImmune Disease (ERN RITA) that gathers healthcare providers HCPs involved in the care of rare immune diseases (RID) from belonging to most European countries. The main objective of the Working Group is to provide a census of already running registries in Europe, ranging potentially from local initiatives to international realities, in order to give a precise picture of the number of registries, number of patients, conditions examined, and types of information collected, in order to encourage rationalization and efficiency of already existing and future registries.

Registry Design

The MeRITA Registry coordinator is the Chairman of the Working Group on Registries and Biobanks of the ERN RITA and all associated partners are members with a relevant specific expertise in rare immune disorder (RID). All these individuals are actively involved in the care of affected patients and in many aspects concerning basic and clinical research of RID. The other members of the ERN that are not directly involved in the Working Group participate in the collection of data on already diagnosed and suspected patients and actively collaborate in the dissemination of the information in their national contexts. All the participants are strongly motivated toward the MeRITA project, which provides an extraordinary tool for a better understanding of these disorders. The MeRITA project governance body consists of: The MeRITA project governance body consists of:

1. the RITA coordinator;
2. the RITA subtheme coordinators for Primary Immunodeficiency (PID), AutoImmune (AI), AutoInflammatory Diseases (AID), and pediatric rheumatology;
3. two RITA Patient Advocacy Group (RIPAG) representatives, and in particular:

- the representative of the International Patient Organization for Primary Immunodeficiencies (IPOPI);

- the representative of the European Patient Advocacy Group (ePAG).

The MeRITA project steering committee consists of:

1. the MeRITA grant coordinator;
2. the RITA coordinator:
3. the ESID registry representative.

Data Elements

The MeRITA Registry is designed to collect core information on the diseases covered by the activities of the ERN RITA. The identification of this core information aims at increasing interoperability of rare immune disorder (RID) registries and is based on Common Data Elements (CDE) that are recommended by European standards for data collection. They contain basic data elements that are to be registered by each European RID registry, which have been identified to be essential for further research. They refer to patient’s personal data, diagnosis, disease history and care pathway, as well as information for research purposes and disability level.

You can download the data elements template, where the data dictionary for the elements is provided.