Registries
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 cancer registry inevitably depends on the local healthcare environment and the available sources of information. Quality of care is relevant to quality of CRs.
For example, inappropriate pathological diagnoses will result in misclassification. Rare cancers are particularly exposed to discrepancies in quality of care. 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.
EURACAN aims to set up a clinical registry and its objectives are:
- 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 to facilitate future studies on rare solid cancer biology. Lastly, the registry will also serve as a tool to steer EURACAN towards achieving its objectives.
