EURACAN, the European Reference Network on Rare Adult Solid Cancers, works to optimise care for European patients through shared expertise and data. By developing registries, EURACAN aims to improve diagnosis, treatment, and outcomes for these rare cancer types.
Rare cancers are covered by widespread cancer registration in the EU. As of 2019, there are nearly 200 active population-based cancer registries (CRs) in Europe. However, the quality of a CR inevitably depends on the local healthcare environment and the available sources of information. Quality of care is relevant to quality of CRs. Rare cancers are particularly exposed to discrepancies in quality of care, with some (e.g. sarcomas) being particularly affected compared to others (e.g. squamous cell carcinomas of the head and neck). There tends to be a lack of clinically relevant data, e.g. on detection, staging, treatment and treatment effects, across CRs (Siesling et al, Eur J Cancer 2014).
In its Rare Cancer Agenda 2030, JARC recommends developing clinical registries on rare cancers within networks specialising in rare cancers, to prospectively collect clinical information on the entire patient journey, with a view to increasing knowledge on rare cancers and supporting clinical research.
A clear window of opportunity has been provided by the creation of European Reference Networks (ERNs). The purpose of ERNs is to provide multidisciplinary second opinions for the management of complex cases, disseminate knowledge on rare cancers, produce clinical practice guidelines, and foster research by setting up shared registries. Twenty-four ERNs were launched in March 2017, four dedicated to or involving rare cancers: the ERN on rare adult solid cancers (ERN EURACAN), the ERN on haematological diseases (EuroBloodNet), the ERN on paediatric cancer (ERN PaedCan), and the ERN on genetic tumour risk syndromes (ERN GENTURIS).
We aim to set up a clinical registry for the ERN EURACAN. Paediatric and haematological cancers, the two remaining families of rare cancers, are covered by ERN PaedCan and EuroBloodNet, respectively.
The EURACAN Registry will cover all EURACAN domains. Its objectives will be:
• to help describe the natural history of rare adult solid cancers (how the rare cancer develops, progress, possible association with other diseases, etc.);
• to evaluate factors that influence prognosis (e.g. mortality, survival, progression-free survival) and treatment response;
• to assess treatment effectiveness (systemic, radiotherapy, surgery, target therapy, immunotherapy and possible combinations);
• to measure indicators of quality of care (diagnostic and staging procedures, treatment strategies, follow-up etc.).
The collected information can be used to improve our ability to prevent, diagnose and treat all aspects of rare adult solid cancers, with the ultimate goal of improving survival and quality of life for patients with rare cancers.
Furthermore, the registry aims to collect information, where available, on the storage of biological samples at the premises of the participating healthcare providers (HCPs) (to facilitate future studies on rare solid cancer biology).
Finally, the registry will also serve as a tool to steer EURACAN towards achieving its objectives.
The governance of the EURACAN registries on rare adult solid cancers is managed by a collaborative body comprising oncologists, researchers and healthcare professionals, ensuring that data collection and analysis adhere to the set ethical standards.
The observational clinical registry (cohort design) of the European Reference Network on Rare Adult Solid Cancers:
• The protocol for the rare head and neck cancers
(https://pubmed.ncbi.nlm.nih.gov/36928072/)
• The Head and Neck Registry of the European Reference Network on Rare Adult Solid Cancers (EURACAN) (https://clinicaltrials.gov/study/NCT05483374)
• The Epithelioid Hemangioendothelioma Registry of the European Reference Network on Rare Adult Solid Cancers (EURACAN) (EHE)(https://clinicaltrials.gov/study/NCT06408441)
Registry set up was funded by the European Union’s Health Programme (2014–2020). Consumers, Health, Agriculture and Food Executive Agency (CHAFEA). Grant Agreement number: 947604 — STARTER — HP-PJ-2019. Grant of 200,000€.
Grant Agreement number: 947604 — STARTER — HP-PJ-2019. European Health and Digital Executive Agency (HaDEA)
Ministero della Salute – fondi Ricerca CorrenteRete IRCCS 2020 ACC – RARITY
The EHE Rare Cancer Charity (UK) contributed funding to the setting up and initiation of the European EHE prospective observational registry in 2023.
Grant Agreement number: 101085486 — EURACAN 2022 — EU4H-2022-ERN-IBA - European Health and Digital Executive Agency (HaDEA)
Grant Agreement number: 101156790 — EURACAN23-27— EU4H-2023-ERN2-IBA- European Health and Digital Executive Agency (HaDEA)
