ERN-EYE: a European reference network dedicated to rare eye dis-eases
The congress of the Italian Society for Genetic Ophthalmology (SIOG) was a prime example of successful collaboration. For this year’s event, medical professionals and scientists met in Naples to discuss research and treatments for rare eye diseases at a European level. Topics included collaboration within the ERDC (European Retinal Disease Consortium) and ERN-EYE, a European reference network dedicated to rare eye diseases. Prof. Eberhart Zrenner, who has been an internationally renowned specialist in the research and treatment of rare eye diseases for many years now, gave a presentation on neuro-stimulation and the effects of transepithelial electro-stimulation on the sight of patients with retinitis pigmentosa.
At this year’s congress of the Italian Society for Genetic Ophthalmology (“Congresso SIOG – Società Italiana di Oftalmologia Genetica”) in Naples, Italy, specialists in rare eye diseases met to discuss research results and treatments, as well as new and existing opportunities for cooperation at a European level. To improve cross-border treatment and care for patients with rare eye diseases, the European Union and the member states launched 23 European Reference Networks (ERNs) at the start of 2017. Retina Implant AG welcomes and supports the development of the European Reference Network for Rare Eye Diseases (ERN-EYE).
The members of the network all have extensive experience in researching and treating rare eye diseases. The aim is to promote knowledge transfer between ERN experts and doctors, who will be able to query a database to find out for their patients which special treatment options are available for the relevant condition and where. “To support this Europe-wide patient referral system, treatment reimbursement should be regulated and harmonised on a transnational basis,” explains Reinhard Rubow, CEO of Retina Implant AG. “For instance, a patient from Ireland could have our subretinal optic chip implanted at our implantation centre in Tübingen, and the costs would be reimbursed. ERN provides a framework that will allow future patients to be treated at the location in Europe that is most suitable for them.”
Working with patient associations such as Retina International is considered to be essential here, and the organisation’s president, Christina Fasser, raised the issue of patient perspective in Naples: “We must not leave anyone behind – everyone has a right to the best standards in diagnosis and treatment.”
“These closing words from Christina Fasser precisely reflect our own motivation to continue our research and development work,” agrees Rubow. “Just recently, the French health authority HAS (Haute Autorité de Santé) approved our Forfait Innovation application to assess the benefits of our RETINA IMPLANT Alpha AMS subretinal implant,” he adds. The accompanying Retina Implant AG study investigates the impact of the implant on the participants’ daily lives. For the first time, patient-reported outcome surveys are being used that are specifically adjusted to low-vision patients and their social routines, age, language and life situations. The subretinal implant from Retina Implant AG can help restore partial sight to visually impaired patients who perceive very little or no light as a result of different forms of the degenerative retinal disease retinitis pigmentosa (RP).
In a lecture entitled “Close to the physiology of vision”, Prof. Eberhart Zrenner reported on patients who have had the chip implanted and have thus partially regained the function of degenerated photoreceptors. For instance, they can perceive light sources, which improves spatial orientation. “Clearly, Retina Implant AG not only develops innovative treatments and high-tech products for people who suffer from RP – we also engage with networks and the international scientific community to drive forward research in this area as a whole,” Rubow sums up.