A recent EURACAN survey highlights a high uptake of recommendations from medical oncologists, potentially leading to improved patients’ survival
When we develop clinical practice guidelines and work together to elaborate what the standard treatments for cancer are, we take two assumptions: the first is that our recommendations are actually used by medical oncologists; the second is that guidelines have a significant impact on improving patients’ survival.
A recent EURACAN survey that mapped clinical practice guidelines use across the European expert centres within its network in 2025, suggests that these are more than simple assumptions. Findings showed that over 60% of centres use guidelines frequently or consistently – most of them developed by ESMO-EURACAN. By reviewing the current literature, we also found that guidelines use is truly associated with an improved survival and a reduction of the risk of relapse and death of about 30-40% in most of the studies that were conducted.
In the field of rare cancers, a fundamental challenge shapes almost every aspect of care: by definition, these diseases are uncommon, and many physicians encounter them only rarely. As a result, oncologists’ expertise is unevenly distributed. From this perspective, well-developed clinical guidelines may have an even greater weight than in common tumours. Moreover, rare malignancies rarely benefit from large randomised clinical trials simply because of their low incidence in the patient population. Consequently, recommendations for their management mostly rely on retrospective studies, pooled analyses, and the collective clinical experience of specialised reference centres. In this context, guidelines serve not merely as advice but as a crucial tool to harmonise knowledge that is otherwise scattered.
Although our survey data would require further investigation, they provide reassurance that we are on the right track to improve the quality of rare cancer care in Europe. In the last ten years – since the EURACAN consortium was started – there has been an increase in the proportion of patients properly managed according to ESMO-EURACAN recommendations and within reference centres. A key contribution has been the growing role of patients with rare cancers themselves. When we began, a few patient advocacy groups were collaborating with us, whereas today a larger number of patient organisations are actively involved in many areas of our activity, helping shape clinical guidelines, advocating for changes in scientific and health policies to make systems more patient-centred, and supporting the development of better tools and resources to inform patients.
However, we recognise that we are not yet where we would like to be. Still today, several bottlenecks persist in the optimal management of rare tumours, including a lack of timely access to reference centres for patients, a shortage of the training workforce, and limited investment in research and innovation.
Important steps have been taken, but progress is slow, and there is a clear determination to accelerate these efforts in the years ahead.
