News and events


Spring 2017 update from Chordoma UK and Professor Adrienne Flanagan

During the past 24 months, much has been achieved. We have compiled over 400 samples of chordoma from patients across the UK. Contributions have also been made from afar including Slovenia. This represents the largest collection of chordoma samples in the world.  Tissue microarrays have been made from these samples and are available for research purposes.

Detailed documentation of the behavior of the disease has been made of more than 60 patients and this will be used as a model for building a network across the UK.  In the first instance we have established close links with Mr David Choi, a leading neurosurgeon in the National Hospital for Neurology and Neurosurgery, Queen Square, London. Thanks to Chordoma UK we have been able to employ the UK's first Chordoma patient and biobank coordinator. This important role is now one year old and Chordoma UK has agreed to continue this support for a further 2 years.  

We are currently exploiting the wonderful opportunity that the 100,000 Genomes Project provides including patients with chordoma in this study.

Our published paper in The Journal of Pathology on the impact of EGFR inhibitors has contributed to the pending first randomized clinical trial for chordoma. Funding for this important research through Chordoma UK. 

Scheipl S, Barnard M, Cottone L, Jorgensen M, Drewry D, Zuercher WJ, Turlais F, Ye H, Leite AP, Smith JA, Leithner A, Möller P, Brüderlein S, Guppy N, Amary F, Tirabosco R, Strauss SJ, Pillay N, Flanagan AM. (2016) EGFR inhibitors Identified as a Potential Treatment for Chordoma in a Focused Compound Screen.  J Pathol. Apr 22;239(3): 320-334.

The funding that was provided from Chordoma UK to develop a new test for detecting the tumour signature in the blood of patients with chordoma has revealed that in some patients this has been successful. A larger study is required to establish if this can be introduced into routine clinical practice to monitor patients with chordoma. We have been collecting samples from patients for the last 2 years and this can now be used to expand the study.

We have recently been awarded £25,000 to study the role of brachyury in chordoma.

All research including data collection is undertaken with appropriate ethical approval.

UCL/UCLH Biobank for Studying Health and Disease. REC reference:15/YH/0311

IRAS project ID:183090 


Want to make a donation?

You are the reason we can keep providing our vital supprt and funding. Individual donations and gifts may be made directly to Chordoma UK and enhanced through GIFT AID. Your fundraising can benefit from Chordoma UK`s charitable status enabling donations to be made through the Gift Aid scheme directly to the Chordoma UK bank account.

Donate now

Join our Mailing List

Please sign up to follow our ongoing story and events.


How your donation is spent

There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

Find out more

Get in touch

If you have any questions about Chordoma UK, or would like to talk to someone about cancer, send us an email and we'll get back to you as soon as we can.

Contact us


We all support each other

To share experiences, ask questions or vent your emotions and find others who understand.

Join us here