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.
Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult with rare or low-prevalence complex diseases or conditions. Between 5 000 and 8 000 rare diseases affect the daily lives of around 30 million people in the EU.
EURACAN is the ERN for adult rare solid cancers: 1 of the 24 ERNs working on a range of thematic issues. The ERN for adult rare solid cancers is coordinated by the Centre Léon Bérard with the objective to improve the quality of care for all European citizens affected by rare cancers, while ensuring an optimized and homogeneous care and access to innovation, is provided throughout the EU member states.
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 RARECARE classification and ICD10.
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.
EURACAN is a patient-centered multi-domain ERN that gathers the largest network of active EU centres involved in the management of patients with adult rare solid cancer: the network distinguishes rare cancers into 10 domains corresponding to the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD10), RARECARE and RARECAreNet projects.
AREAS OF EXPERTISE
|G1||Sarcoma of the soft tissue, bone and viscerae (Sarcoma)|
|G2||Rare neoplasm of the female genital organs and placentas (Rare GYN)|
|G3||Rare neoplasm of the male genital organs, and of the urinary tract (Rare GU)|
|G4||Neuroendocrine tumours (NET)|
|G5||Rare neoplasm if the digestive tract (Rare GI)|
|G6||Rare neoplasm of endocrine organs (Endocrine)|
|G7||Rare neoplasm of the head and neck: Salivary gland tumours, nasopharyngeal cancer, nasal and sinonasal cancers, middle ear (Rare H&N)|
|G8||Rare neoplasm of the thorax: Thymoma, mediastinum and pleura (Rare Thoracic)|
|G9||Rare neoplasm of the skin and eye melanoma (Rare Skin/Eye melanoma)|
|G10||Rare neoplasm of the brain, spinal cords (Rare Brain)|
The domains are based on preexisting successful collaborations, in particular for clinical research and expert networks active in the last 10-20 years. Productive collaborations were developed within these networks, for clinical trials (eg. within EORTC tumour groups or as national groups), for establishing guidelines (with ESMO, EORTC or tumour groups) and for generating national or multinational networks (eg. ENETS, Conticanet and EuroBoNET, among others). Research projects supported by FP6, FP7, and H2020 grants have also been completed in these different components of EURACAN.
Accordingly, based on this previous work and existing structures, EURACAN distinguished rare cancers in 10 the domains specifically, and further into subdomains. The EURACAN domains gather groups of rare tumours defined by common histologic features, while the subdomains are based on specific histological classifications and organ of origin categorized under the parent domain.