AMMF’s CCA Data Project – Poster presentation at EASL International Liver Congress 2020

AMMF has long considered a major reason for so little awareness of cholangiocarcinoma and so little progress towards early diagnosis and effective treatments, is the lack of robust data to support what we see every day in our work – increasing incidence, heartbreaking mortality levels, and an ever growing number of young adults being diagnosed.

We know there are major problems with terminology, with coding and with recording CCA, which has resulted in poor data. But robust data are vital to drive policy, to encourage research funding and so much more, which is why AMMF employed an analyst and entered into partnership with PHE to work within NCRAS on a project, the first of its kind in CCA, to produce the most up to date CCA data, including incidence and mortality, age/gender breakdown.

Early results from this work were shown at the ESMO-GI conference 2019 and confirmed an incidence which has been rising year on year over the last 17 years, and an appalling mortality rate which equals that of incidence and, in some years, surpasses it.

A poster showing interim findings was presented at EASL’s 2020 International Liver Congress:












This shows further results from the project highlighting the following clear and important messages about CCA:

  • We are seeing rates are continuing to increase everywhere and this needs to be addressed.
  • Survival continues to be very poor (median survival still only 4 months).
  • There is marked regional variation in incidence and mortality around the country, which has persisted and even worsened over time.
  • Overall survival seems to be significantly lower in the most deprived.  This needs further investigation.
  • The most common route to diagnosis for cholangiocarcinoma remains the emergency route, which emphasises the poor rate of early diagnosis and the late presentation of this disease – an area of unmet need.

The work on AMMF’s data project continues ….

To see the poster presented at ESMO-GI 2019, go to:…/Incidence_Mortality_Poster_ESMO-GI_Ju…

EASL – European Association for the Study of the Liver
PHE – Public Health England
NCRAS – National Cancer Registration and Analysis Service
ESMO – European Society for Medical Oncology


August 2020
Reviewed August 2023