After an extensive assessment, we are pleased to announce that eUROGEN, the European Reference Network (ERN) for rare and complex urogenital diseases and conditions, was officially launched during the 3rd conference on European Reference Networks in Vilnius, Lithuania 9-10 March.
The European Commissioner for Health and Food Safety, Vytenis Andriukaitis, officially awarded certificates to the 24 ERN Coordinators. They represented almost a thousand of multidisciplinary medical teams of more than 300 hospitals, located in 25 EU Member States and Norway. This will improve diagnosis and treatment and help provide affordable, high-quality and cost-effective healthcare.
Prof. Chris Chapple, Secretary General of the EAU and also Coordinator of eUROGEN, led a delegation of the network’s clinicians and patient representatives. eUROGEN comprises 29 healthcare providers from 11 Member States. Prof Chapple gave a rousing speech at the event and said “I am honoured to be at this meeting celebrating the birth of this new form of cooperation between healthcare providers at a European level. In the case of rare or complex urogenital diseases, we can achieve quicker diagnosis and better treatment outcomes for patients by working together at an EU level using an evidence-based approach and by so doing more effectively advance our knowledge of every condition we are treating. This has the full support of the European Association of Urology (EAU) and we will be able to harness the scientific, clinical and educational excellence of the EAU and its membership of over 16,000 members to achieve this.”
What are ERNs?
ERNs are clinical networks bringing together healthcare providers across Europe to tackle complex or rare medical conditions that require highly specialised treatment and a concentration of knowledge and resources.
Between 6,000 and 8,000 rare diseases affect an estimated 30 million people in the EU and frequently a lack of specialist knowledge for specific rare diseases means patients can miss out on diagnosis and treatment options in their own country. By consolidating knowledge and expertise scattered across countries, ERNs give healthcare providers access to a much larger pool of expertise. This will result in better chances for patients to receive an accurate diagnosis and advice on the best treatment for their specific condition. It is expected that ERNs will lead to improvements in service delivery, working systems, patient pathways, clinical tools, and the earlier adoption of scientific evidence. They will also act as focal points for medical training and clinical research.
How will eUROGEN operate?
To review a patient’s diagnosis and treatment, eUROGEN will consult, exchange information and share knowledge with other members of the network. A dedicated IT platform and telemedicine tools will be used for this purpose. ERNs are not directly accessible to individual patients. However, with the patient’s consent, and in accordance with the rules of their national health system, a patient’s case can be referred to the relevant ERN member in their country by their healthcare provider.
ERNs work as an accreditation system, with participating healthcare providers being awarded a protected logo which certifies them as centres of clinical excellence in a particular clinical domain. To achieve this status, providers will have documented their competence, experience, and level of activity, as well as demonstrated evidence of good clinical care and outcomes through a rigorous assessment process.
The objectives of eUROGEN are as follows:
- Improve care for patients with rare, or low prevalence complex diseases or conditions
- Concentrate expertise where capacity and knowledge are rare
- Provide access to the most appropriate diagnosis and treatment of certain conditions
- Allow expertise to travel across borders – not patient
- Act as focal point for medical training and research