Fondazione Gianni Benzi participated in the RE(ACT) Congress and IRDiRC (International Rare Diseases Research Consortium) Conference 2023 that took place on 15-18 March in Berlin.

The event brought together scientific leaders, experts and young scientists from several scientific fields to present cutting-edge research, exchange ideas and discuss policies related to rare diseases research. Patients and patient organizations committed to research also attended to share their experiences and perspectives.

Annalisa Landi, researcher at Fondazione Gianni Benzi and actively engaged in rare diseases research activities, took part in the event presenting a poster on the Informed Consent Form for the European Reference Networks (ERNs) registries, developed within the European Joint Programme on Rare Diseases – EJP RD.

This registry Informed Consent Form template fosters the reuse of registries data for research purposes, in compliance with the applicable laws and standards, allowing easy adaptation to the research Networks, country and site level specificities.  It was also translated in 26 national languages.

Moreover, Paediatric material is being developed to collect minors’ assent.

Discover more about the Informed Consent form here!