MeRITA - Registry concept, Registry structure, Data & structure

Registry concept

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

Registry structure
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 disease (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 will participate to the collection of data on already diagnosed and suspected patients and will actively collaborate to the dissemination of the information in their national context. All the participants are strongly motivated toward the MeRITA project that could represent an extraordinary tool for a better understanding of these disorders. 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:
  4. - 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 & Structure
The MeRITA Registry is designed to collect core information on the diseases covered by the activities of the ERN RITA. The identification of these core information aims at increasing interoperability of rare immune disorders (RID) registries and is based on the Common Data Elements (CDE) that are recommended by European standards for data collection. It contains the basic data elements to be registered by each RID registry across Europe, which have been identified to be essential for further research. They refer to patients personal data, diagnosis, disease history and care pathway, information for research purposes and about disability.

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