What is a European Reference Network?
European Reference Networks (ERNs) for rare diseases are designed to serve as research and knowledge centres, updating and contributing to the latest scientific findings, treating patients from EU Member States and ensuring the availability of subsequent treatment facilities where necessary.
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.
What benefit to ERNs bring to patients?
It can be a challenge to provide highly specialised treatment or care for patients who have complex conditions. As we know in the case of rare eye diseases this is especially true when the prevalence of conditions is low.. This challenge is due to both the scarcity of expertise and to the scattering of small patient populations, sometimes in isolated locations where expertise does not exist or cannot be accessed.
Collaboration between EU Member States can support the pooling of expertise and help to ensure that knowledge is shared between healthcare professionals across borders. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.
European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders.
Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERNs that is being established can bring added value to rare disease patients. ERNs aim to provide healthcare professionals with access to expertise that they may not be able to access in their country.
RI has been a driving force in developing an application to the EU Commision to acredit a RARE-EYE ERN. Working with Professor Helene Dollfus in Strasburg, France an application of thirty Health Care Providers - HCPs (Hospitals) accross Europe who if succussful will establish a network of experts that will deliver access to diagnosis, to care pathways, establish registers, run clinical trails and deliver innovative threapies for rare eye diseases. Importantly patients will contribute to the governance of these networks centrally and nationally.
RI is extremely grateful to the clinicians and researchers who volunteered to support this complex application process and contributed so much of their time to deliver it. If successful this application will bring about a sea change in the delivery of care for rare eye diseases in Europe and would provide an excelent model for other regions. If the application is not successful on this occasion the group will continue to work together for the patients is serves.
We owe enourmous thanks to Dr. Dorothee Leroux and Professor Helene Dolffus, pictured above, for all of thier work in coordinating this project and wish them every success in this application!