European Reference Networks and RD-ACTION are tackling challenges concerning Clinical Practice Guidelines

(Orphanews 2018.12.19)

RD-ACTION set-out to add value by working with the new Networks to identify -and where possible, support the embedding of- good practices and resources. An important step in this mission occurred on 6th and 7th December in Rome, in the form of a major workshop uniting key stakeholders (63 participants, 23 of the 24 ERNs were represented) to explore for the first time exactly how and where the ERNs can add value to the essential functions of generating, appraising, disseminating and using Clinical Practice Guidelines (CPGs). A key goal of the workshop was the identification of good practices which could be shaped into ‘recommendations’. Those recommendations can serve as a blueprint of excellence, to advise doctors closer to the patients on how to treat them in a way that reflects the best possible knowledge and will generate the best possible outcomes. The main ‘areas’ highlighted for recommendations include the following:

  • Before attempting to recommend the use of a particular methodological approach, a ‘shortlist’ of the main methods pursued by ERNs will be created.
  • ropose recommended practices in collaboration with stakeholders such as professional scientific societies and UEMS (Union Européenne des Médecins Spécialistes : European Union of Specialised Doctors).
  • The financial and ethical issues as well as time-commitments.
  • Several recommendations emerged regarding the optimal engagement with patients and patient organisations.
  • ‘national impact’ if countries are not able to implement that guidance.