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European Reference Network for Neuromuscular Diseases - EURO-NMD - Registry Website

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Overall Architecture for the FAIRification process

22 February 2021 by Nawel Lalout

Since September 2020, several brainstorming sessions have taken place between the Freiburg development team and FAIR Data Stewards at Radboudumc to discuss the overall architecture for EURO-NMD that would support federated queries. A design has been proposed (Figure 1), incorporating not only the EURO-NMD registry hub, but also indicating how interoperability with the four participating pilot registries can be achieved. 

Figure 1. Suggested implementation architecture for EURO-NMD.

With the proposed design, the team is exploring two options to address the computational needs of the participating EURO-NMD Health Care providers (HCPs).

Option 1: Centralised approach

EURO-NMD has a central FAIR Data Point (FDP), connecting other registries and including the Virtual Platform of EJPRD. With this approach, organisations send non-FAIR data to the IT development team in a simple CSV format. The technical team in Freiburg, uses a converter to transform non-FAIR data into FAIR data and exposes them to EURO-NMD ‘central’ FDP. 

Option 2: Decentralised approach

Organizations convert their own data using a proposed template and converter, and expose the FAIR data to their own FDPs which are then indexed in the EURO-NMD FDP catalogue.

Both options are technically possible. The first option means less challenges to the local IT infrastructure of the participating HCPs, but requires more contractual agreements between the HCPs and Freiburg University and introduces some liability of the data contained in the registry hub. The second option could offer considerable advantages in overcoming complications with the use of different protocols and legislation in different countries. Ultimately, the participating institutions will decide on their preferred choice. The same approach will be suggested to the four pilot registries.

Category iconFAIR,  Project update

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This project is funded by the 3rd EU Health Programme;
Grant Agreement: 947598
EURO-NMD Registry — HP-PJ-2019

Total EU funding: 200,000€
Total Patient Organizations in kind contribution : 274,641.20€
This project is co-funded by
the European Union