As part of the capacity building activities of the project RARE-Bestpractices, which intend to promote guideline quality standards for rare diseases across European Member States and to support the upcoming European Reference Networks and Centres of Expertise in the development of their capacity to produce and use health care guidelines on rare diseases, the Associazione per la Ricerca sull’Efficacia dell’Assistenza Sanitaria – Centro Cochrane Italiano (AREAS - CCI), partner of the project, organized two courses for health care guidelines developers for rare diseases.

The first course, held in Milan (Italy) at IRCCS Istituto di Ricerche Farmacologiche Mario Negri, 10-12 February 2016, was focused on guidelines for the treatment of rare diseases. Twenty-eight people, coming from Europe and Canada, attended the course. The second course, held in Modena (Italy) at the University of Modena and Reggio Emilia on 6-7 June 2016, was focused on guidelines for the diagnosis of rare diseases and 19 persons coming from Europe participated.

The programme courses and relative lectures are available on the following links:

http://www.newaurameeting.it/files/pdf/102-pdf_program-programme-gl-febrary2016-newdeadline.pdf

http://www.cochrane.it/sites/cochrane.it/files/uploads/Programme_GL_June2016_1.pdf. 

In general, the courses provided participants with the opportunity to acquire skills necessary to produce health care guidelines for rare diseases. In particular, the topic addressed were: scope, developing clinical questions, planning the evidence review, quality of evidence, developing and wording recommendations. In the first course, lectures about panel choice, literature searching, implementation and dissemination of the recommendations were also presented.

Both courses were appreciated by the attenders. From the first course, 57% of participants declared that the knowledge and information gained from participation at the course met their expectations, 69% evaluated the trainers as good communicators and 77% considered the trainers knowledgeable on the topics. From the second course the evaluation was higher, 67%, 87% and 80% respectively.

Graziella Filippini
Associazione per la Ricerca sull'Efficacia dell'Assistenza Sanitaria, Centro Cochrane Italiano