An analysis jointly conducted by the European Society for Medical Oncology (ESMO) and EURACAN, the European Reference Network (ERN) for rare cancers, reveals inconsistent adherence to Clinical Practice Guidelines in managing rare cancers across Europe.
This inconsistency is noted despite evidence demonstrating improved patient outcomes when guidelines are followed.
The results were presented at the ESMO Sarcoma and Rare Cancers Congress 2026.
The Challenge of Rare Cancers
Rare cancers affect over 650,000 individuals annually in Europe, accounting for 24% of all cancer diagnoses. These conditions present significant management challenges, including delayed diagnosis, limited treatment options, and insufficient research. Such factors contribute to poorer survival rates compared to more common cancers.
Developing comprehensive clinical guidelines for rare diseases is inherently difficult due to their low incidence and limited evidence from randomized clinical trials. This process often requires cross-border expertise and relies heavily on retrospective studies, registries, and expert consensus.
However, EU-level collaboration through European Reference Networks has increasingly facilitated the establishment of evidence-based standards. This includes the development of ESMO-EURACAN Clinical Practice Guidelines for a growing number of rare disease areas.
EURACAN Survey Uncovers Guideline Usage
A survey by EURACAN, conducted in September–October 2025, mapped the actual usage of these guidelines within its network. The EURACAN network encompasses 102 expert healthcare institutions across 25 countries.
Overall guideline uptake was strong, exceeding 60%, with most respondents reporting