Press release - ERN-EYE
5th Scientific Workshop December 1st to 2nd 2022
THE EUROPEAN REFERENCE NETWORK ERN-EYE
SCIENTIFIC WORKSHOP ON CLINICAL TRIALS
Following our previous workshops devoted to ontology, genetic testing, gene therapy and Eye Modelling, ERN-EYE organized a fifth workshop on “Clinical Trials in Rare Eye Diseases - Meaningful Outcomes” from the 1st to 2nd December 2022 in Ghent, Belgium. This meeting took place in hybrid form and gathered nearly 150 people, remotely or on site, from the HCPs representing 17 member states of the network, ePAG members and patients associations as well as prestigious invited speakers.
The workshop was opened by the organizing committee composed of Pr Hélène Dollfus, ERN-EYE coordinator, Pr Bart Leroy and Pr Elfride de Baere, hosts of this ERN-EYE workshop and representatives of the Ghent University Hospital.
The morning of the first day was dedicated to internal meeting of ERN-EYE working groups. In addition to contributing to the workgroup and transversal workgroup sessions, the ePAGs developed the goals and a 2 years action plan in two ePAGs working meetings, with a focus on translating achievements and learnings of the very well established IRD space into patient/clinician partnership in all RED areas in all EU countries.
In the afternoon, plenary sessions of the workshop were dedicated to Lessons learned from clinical trials in Rare Eye Diseases. Speakers from 6 countries presented clinical trials on going or on hold due to various causes.
In the light of the overarching theme “Meaningful outcomes”, ePAGs and patient representatives of the wider patient community presented a 360 degree patients' view and invited all stakeholders, including regulatory bodies, to embrace patient partnership in the development of research priorities and endpoints, that are clinically significant AND meaningful for patients, in order to make clinical trials successful.
The second day was entirely dedicated to outcome measures: how to identify and improve them in Rare Eye Diseases. The word was also given to a member of the European Medicines Agency about meaningful outcomes and specificities for eye-related studies.
Over the two days, more than twenty European and international experts presented and discussed the latest advances in clinical trials, their current challenges and their implications for the Rare Eye Diseases patients.
Thanks to this workshop, the issues, the needs and the actions needed in clinical trials, registries and natural history studies were discussed, as well as the role of ERN-EYE in the coming months on this subject.
The next ERN-EYE meeting will be a General Annual Meeting and Governance Board and will take place from 23rd to 24th March 2023 in Ljubljana, Slovenia.