Pictured: Christina Fasser, President of Retina International and Dr. Dorothee Leroux, ERN-EYE Project Manager
On March 9th, 2017 The European Reference Network for Rare Eye Disease, ERN-EYE was awarded accreditation along with 24 other Networks by the Commissioner for Health at the EU, Mr. Vytenis Andriukaitis at a ceremony in Vilnius, Lithuania. The event was attended by 500 delegates including high level members of the European Commission, MEPs, clinical and scientific representatives and members of the European Patient Advocacy Groups (ePAGs). ePAG members will sit on governance and other committees of the ERNs ensuring that the patient voice is at the centre of all decision making.
ERN-EYE is led by Coordinator Professor Helene Dollfus who is based at the University Hospital Strasbourg, France. There are 30 Health Care Providers (Hospitals) representing 13 Member States in the ERN-EYE currently. ERNs were established to coordinate the diagnosis, care and treatment of patients living with rare and complex diseases, while also being centres for research and innovation. In the ERN the expertise will ‘travel’ through the establishment of virtual clinics and they will also link with networks globally to develop better standards of diagnosis and care for patients and work on the innovation of future care.
The ERN-EYE was represented by 14 delegates from HCPs across Europe as well as President of Retina International, Christina Fasser and CEO, Avril Daly. The group made its presence felt with questions from the floor from Professor Bart Leroy (Ghent University Hospital) and Mr. David Keegan (Mater Hospital Dublin) on process of the all-important data collection and upload which will be critical to the success of the network.
Avril Daly spoke at the final session on ‘The Way forward’ which was chaired by the Director General of DG Santé Mr. Xavier Prates Monne. Ms Daly highlighted the work undertaken by patient groups to bring about the ERNs, from twelve years of advocacy to publicising the process through learned societies and encouraging clinicians to work together on what was a complex proposal for accreditation. She also spoke of the work undertaken by patient advocates to ensure that the Eye was seen outside of the brain as the extraordinary and complex organ it is in its own right.
The day finished with the awarding of the accreditation of the Networks and on Friday March 10th work started in earnest with a meeting of ERN-EYE delegates. A Kick Off of meeting of the ERN-EYE which will include representation from all HCPs will take place in Tubingen Germany on April 3rd – 5th.
Of the accreditation President of Retina International Christina Fasser said ‘This is a day of huge significance for patients living with rare eye disease not only in Europe but globally. The diagnosis and care of patients through these networks will ensure improved data collection processes and the development of interoperable registers which will in turn better facilitate the clinical trial process. We believe that this will lead to a more expedient development of treatments and will help to de-risk investment in the area. We have representation from the United States and Canada on our committee to ensure that the ERN-EYE is well networked across the Atlantic and will work with our member groups in other regions to further link this network for better outcomes for all our patients wherever they are living’.
Patients in the rare disease community along with clinicians and researchers have been advocating for the development of European Reference Networks (ERNs) for over a decade. Work has been ongoing at the multistakeholder European Committee of Experts in Rare Diseases (EUCERD) to find a home for almost 8,000 rare diseases. 24 ERNs will now work across specific disease areas to serve as research and knowledge centres, updating and contributing to the latest scientific findings, treating patients from other Member States and ensuring the availability of subsequent treatment facilities where necessary. The definition of ERN should also reflect the need for services and expertise to be distributed across the EU.
In 2005, the Rare Diseases Task Force Working Group on centres of reference submitted its first report: Overview of current Centres of Reference on rare diseases in the EU, including Annexes, to the Commission's High Level Group on Health Services and Medical Care. The report was used to feed a general reflection on the establishment of clinical centres of reference in Europe, based on the example of centres of reference for rare diseases.
In 2006, the Rare Diseases Task Force Working Group on centres of reference submitted its second report Centres of Reference for rare diseases in Europe: State-of-the-art in 2006 and recommendations of the Rare Diseases Task Force. The report detailed the use of the concept of centres of reference and their functions.
Up until the development of ERNs there was no common definition of what a centre of reference is among those Member States which have already established such centres. Even the definition of a rare disease varies between countries with official centres of reference, although there is a well-defined prevalence in Europe qualifying a disease as rare. The UK uses 1 in 50 000, Sweden and Denmark use 1 in 10 000, while France, Italy and Spain use the EU definition of 1 in 2 000.
The number and geographical distribution of centres per country vary from one country to another and are not proportional to the size of the population, reflecting differences in the organisation of health care systems. Some countries take a national approach to the concept (e.g. Bulgaria, UK, Belgium, France, Greece, the Netherlands), while others tackle a more regional one (e.g. Spain, Italy, Sweden). Most countries have not yet started identifying their expert centres.
The ERN process will now provide guidelines that will lead to more common definitions and criteria as well as the development of IT platforms that will result in the establishment of virtual clinics that will allow for the expertise to travel and not the patient.
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