Workpackage lead

Pr Raoul Hennekam (Amsterdam)

Key objectives

Producing expert consensus statements is one of the main goals of ERNs. The objective can be reached by developing new recommendations, and/or by endorsing (after adaptation, if required) existing national consensus statements, following the recommendations of the ERN CMQS.

We will assess: the number of expert consensus statements (aka clinical practice guidelines) adopted for diseases within the scope of the ERN according to recognized evidence-based methodologies; the number of new expert consensus statements developed by the ERN for diseases within the scope of the ERN and for which no previous guidelines exist, according to recognized evidence-based methodology.


  • Evaluate

    Evaluate existing national and published recommendations using an agreed methodology.

    Collect recommendations for orphan diseases or RDs in several countries and evaluate them.

  • Identify available recos

    Compare validated national recommendations in several languages and publish guideline list and downloadable forms or access links on the ITHACA website, and produce translations of some of it.

  • Make expert statements