Clinical guidelines & expert consensus statements workgroup
Pr Raoul Hennekam (Amsterdam)
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 .