European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources.
To review a patient’s diagnosis and treatment, ERN coordinators will convene a “virtual” advisory board of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools. This way it is the medical knowledge and expertise that travel rather than the patients, who have the comfort of staying in their supportive home environments.
Between 6 000 and 8 000 rare diseases affect or will affect an estimated 30 million people in the European Union. Many of these rare diseases cause chronic pain and suffering, and a number of them can be life-threatening. The negative impact on the quality of life of affected patients, many of whom are children, is significant.
An unfortunate feature of rare diseases and complex conditions is the scarcity and fragmentation of specialist knowledge, which is often not available in the patient’s region or country. Many patients therefore do not find a satisfactory explanation for their symptoms or the necessary knowledge on treatment options. Consequently, many patients and their families rely on the internet to search for doctors and healthcare providers with the expertise to give them the best possible chance of survival.
By consolidating knowledge and expertise scattered across countries, the ERNs will 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.
ERNs are not directly accessible to individual patients. However, with the patients’ consent and in accordance with the rules of their national health system, patient cases can be referred to the relevant ERN member in their country by their healthcare provider.
Working together with Member States, the medical community and patient organisations, the Commission has taken a leading role to develop this unique ERN model: for the first time in healthcare, a formal structure of voluntary collaboration between healthcare providers across the EU has been created for the direct benefit of the patient.
The first ERNs were launched in March 2017, involving more than 900 highly specialised healthcare units from over 300 hospitals in 26 Member States. 24 ERNs are working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency.
CROSS BORDER HEALTH CARE DIRECTIVE
ERNs are set up under the 2011 Directive on patients’ rights in cross-border healthcare. This Directive also makes it easier for patients to access information on healthcare and thus increase their treatment options.
In response to the European Reference Networks (ERNs), 3 ERN candidates in the domain of rare cancers were created:
- ERN for adult rare solid cancers: EURACAN (EUropean RAre CANcers)
- ERN for adult rare haematological cancers
- ERN for paediatric cancers
More than 300 rare cancers have been identified. ERN EURACAN covers all rare adult solid tumour cancers, grouping them into 10 domains corresponding to the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD10), RARECARE and RARECARENet projects. The management of rare cancers poses significant diagnostic challenges, sometimes with major consequences for patients’ quality of life and outcome. Inappropriate management of these patients may also result in an increased risk of relapse, and risk of death.
ERN EURACAN is sharing best practice tools and establishing reference centres for rare cancers. It is also establishing regularly updated diagnostic and therapeutic clinical practice guidelines. The network aims to reach all EU countries within 5 years and develop a referral system to ensure at least 75 % of patients are treated in a EURACAN centre. It seeks to improve patient survival, produce communication tools in all languages for patients and physicians, and develop multinational databases and tumour banks.
The ERN builds on pre-existing clinical and research networks that have successfully conducted clinical trials through the European Organisation for Research and Treatment of Cancer (EORTC), and established guidelines through EORTC and the European Society for Medical Oncology (ESMO). It also benefits from the work of networks formed by the European Neuroendocrine Tumour Society (ENETS) and Connective Tissues Cancer Network (Conticanet), as well as several EU research projects.
EURACAN is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are supported by the European Commission. For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern.