Held in Rome on 23-24 February 2015, the International Course “Health care guidelines on rare diseases. Quality assessment” was the first of the planned training activities of the project RARE-Bestpractices. The course was organized and delivered by the Istituto Superiore di Sanità (ISS) with the support of Healthcare Improvement Scotland (HIS).

Nineteen participants, mostly medical doctors and biologists, coming from 7 different countries (Italy, France, Romania, Lithuania, Sweden, Ireland, Slovenia) were trained to appraise health care guidelines for rare diseases by using the AGREE II instrument, the international tool to assess the quality and reporting of health care guidelines. 

Tutors involved in the course were methodologists and experts on rare diseases and health policies coming from ISS ( D.Taruscio, P.Laricchiuta, C.Morciano) HIS (K.Ritchie), Comprehensive Cancer Centre the Netherlands (S. Kersten), University of Glasgow (M. Hilton Boon). From the European Commission participated Enrique Terol who gave a presentation on the health care guidelines in the framework of the constitution of the European Reference Networks.

A number of topics were addressed during the first day of the course, namely (i) an overview of the RARE-Bestpractices project, (ii) the state of art of European Reference Networks and related novel scenarios for guideline production, (iii) the basic concepts of the development of trustworthy guidelines, (iv) a short description of the available standards and tools for health care guideline development and appraisal, (v) an introduction to the RARE-Bestpractices guidelines and research recommendations databases, and (vi) the AGREE II instrument and its application to rare disease guidelines.

The second day participants had the chance to apply the AGREE II instrument appraising a rare disease guideline and to discuss issues arising in the scoring exercise.

All the course attendees were invited to participate in the RARE-Bestpractices project and to contribute to the development of the collection of the Guidelines database. Coordinated by HIS, they are now part of the group of contributors who are involved in the appraisal of the guidelines to be included in the database.

According to the feedback received from the participants, the course was a powerful learning and networking experience. In the words of one of them:

“Great choice of teachers, good choice of topics, totally changed my point of view about guidelines and critical appraisal”.

The date of the next course on quality assessment of rare disease guidelines is 3-4 December 2015.

Paola Laricchiuta

Istituto Superiore di Sanità

paola.laricchiuta@iss.it