‘Using Standards and Embedding Good Practices to Enable Interoperable Data-Sharing in ERNs’  

26-27th April 2017

 

Practical Resources

• Final Agenda

• Participant (and contact) sheet

• PwP Presentations

  All PwPs are available through the interactive Agenda (above) and also in the dedicated folder

• Main Output: Recommended Practices for Data Standardisation in the Context of the operation of ERNs  

 

 

Tool Kits

• ‘Tool-Kit’ of resources for Orphanet Nomenclature
• ‘Tool-Kit of resources for HPO
• ‘Tool-Kit’ of resources for FAIR Data
• ‘Tool-Kit of resources for PPRL (Privacy-Preserving Record Linkage)

 

(Back to RD-ACTION ERN Homepage)

 

 

Executive Summary

On 26-27^th April, RD-ACTION delivered the latest in a series of workshops aimed towards the ERN stakeholder community, spearheaded under the Policy & Integration WP, a major focus of which is to continue the long-standing Joint Action support for ERNs. “As ERNs take shape and begin operations in earnest, it will be important to have a means of addressing shared challenges (particular relating to policies and activities), and RD-ACTION is charged with the development of consensus recommendations and guidelines with the ERNs, for the ERNs.”

The most recent Workshop on ‘Using standards to promote data interoperability in the ERN framework’ was co-hosted by DG SANTE, which provided the meeting venue. This was a major workshop, organised back-to-back with the first official meeting of the ERN Coordinators’ Group, in Brussels. The workshop was well-attended: 68 participants attended the workshop in total, a mixture of ERN Coordinators, EURORDIS partners, data/eHealth specialists, Coding experts, Phenotype ontology experts, data linkage experts, and DG Sante representatives (including the team responsible for delivery of the ERNs’ clinical patient management system (CPMS)

The impetus for this workshop was primarily the final session of a previous workshop on exchanging data for virtual care in the ERN framework (http://www.rd-action.eu/news/read-rd-action-workshop-outputs-on-virtual-care-within-erns/) which explored how to make the most of data collected in the ERNs for care purposes. After identifying the value of using the ontologies deemed most sensitive and appropriate for rare diseases, participants had expressed a desire to learn more about how to use these sorts of tools practically, to optimise the use and re-use of data collection in the ERN context (cont.)….