Clinical guidelines & expert consensus statements workgroup

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.


4.1: Evaluate existing national and published recommendations using an agreed methodology. Collate list of available national guidelines and published guidelines meeting agreed criteria.

4.2: Publish guideline list and downloadable forms or access links on the ITHACA website. Provide access to national recommendations on ITHACA website and translate 2 of them into English.

4.3: Publish 2 new expert consensus statements in English and 2 other European languages. Develop with the aid of literature /database surveys 2 expert consensus statements and translate them into several EU languages, make them available on ITHACA website .