ERN-EYE Research Workshop

Strasbourg 21st-22nd November 2019: ERN-EYE organised a workshop devoted to clinical research for IRD’s with dedicated sessions for their 13 member states. These sessions facilitated discussions in the advancements and essential requirements regarding clinical trials in their respective regions. Furthermore, the ERN-EYE hosted sessions addressing patient expectations and outcomes from these clinical trials, keeping our efforts focused on helping our patients.


Press Release – ERN-EYE Workshop: 21st-22nd November 2019

After two workshops devoted first to ontology, then to genetic testing, ERN-EYE organized a third one on clinical research from 21st to 22nd November in Strasbourg, France. The workshop gathered nearly 100 participants mainly from our member Health Care Providers and the newly designated affiliated partners as well as prestigious guest speakers.

The workshop was opened by Hélène Dollfus, coordinator of ERN-EYE, and Dominique Sturz, ePatient Advocay Group representative from Austria. This workshop was a unique opportunity to exchange on the progress and challenges of the innovative treatments for inherited retinal diseases (IRD).

The first day of the workshop was dedicated to the state of the art concerning clinical trials for IRDs. During the first session, European and international experts presented the very recent settings and results for the current clinical trials using gene replacement as well as gene editing approaches. The second session was an opportunity for all representatives of the ERN-EYE 13 member states as well as Ireland and Switzerland to present the progresses and needs of their country in terms of clinical research. In addition to them, a round table was organized about “Challenges and state of the art of current clinical studies in Europe” with speakers from all over Europe.

After an ERN-EYE session dedicated to patient’s expectations and realistic outcomes and a round table on current clinical studies and post market in Europe, a satellite meeting was organized by the FHU (Fédération Hospitalo-Universitaire) NeurogenΨcs on the second day. Novel therapies, costs and challenges were discussed and a roundtable on the interactions with industry representatives and clinicians was the opportunity for all involved professionals to actively participate in the debate. The current situation of retinal implantation was also discussed through a specific round table.

This workshop allowed drawing the clinical research needs in the ERN-EYE member countries, as well as the next issues for ERN-EYE in the coming months on this subject.

The ERN Team

Network Coordinator
Professor Hélène Dollfus
Hôpitaux Universitaires de Strasbourg, France

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