Latest News

Understanding Chordoma: A National Cohort Study

2018 sees a new nationwide study Understanding Chordoma: A National Cohort Study opening at the Royal National Orthopaedic Hospital led by Professor Adrienne Flanagan, in partnership with a number of centres. The study will look into all aspects of chordoma with the aim of getting a better understanding of the disease and finding new treatments. Chordoma being such a rare disease, it is important for specialist units to work together to achieve our goal. Ultimately we want to introduce standardised care pathways to guide clinical management and improve outcome for patients.

The new project builds on milestones to which Chordoma UK has made significant contributions: these include the recent publication of the first scientific paper reporting the genetic alterations in chordoma and the appointment of the UK’s first Chordoma Patient and Biobank Co-ordinator- a post pivotal to the running of this study, now held by Tamanah Fayzan. 

Understanding Chordoma: A National Cohort Study brings support and opportunities from a number of sources together. The UK’s flagship 100,000 Genomes Project offers a unique opportunity for studying chordoma, and patients are encouraged to ask their doctors before they have their surgery if it would be feasible for them to participate in this project. The Chordoma Foundation is contributing funding for additional laboratory research on samples submitted to the 100,000 Genomes Project. The Bone Cancer Research Trust is contributing funds to support the biobanking of chordomas at the 5 Bone Tumour Units in England to make this new project a success. Moreover, many clinicians and scientists are committed to seeing this project improve the lives of patients. 

Much of the research to date has been done on chordomas which are located at bottom of the spine, but Professor Flanagan now teams up with Mr David Choi, leading Neurosurgeon at the National Hospital for Neurology and Neurosurgery, who has expertise in chordomas at the skull base to expand the research to these chordomas.

Understanding Chordoma: A National Cohort Study will follow participants over up to 8 years: patients known to have chordoma and new patients are welcome to enrol. Where available tumour samples will be analysed in detail and the results will be correlated with the behaviour of the disease: this will be achieved by studying the scans and blood samples from enrolled patients over the period of the study; samples will also be studied for new therapeutic targets. Participants will also be asked to complete a questionnaire so that we can learn how chordoma affects patients’ lives. 

Ultimately, following participants over time will produce high quality scientific data that will help to advise clinicians on how best to manage chordoma. The study could not begin at a better time, as the London Sarcoma Service will gain access to the UK’s second NHS proton beam generator at UCLH due for completion in 2020. 

Professor Flanagan says “this research will not be possible without the engagement of patients and their loved ones, as well as the doctors and nurses involved in their treatment.  The rarity of chordoma means that every contribution is incredibly valuable; by working together we have the potential to improve care for people with chordoma today, but also to build a legacy for future research.” 

If you have a diagnosis of chordoma and you would like to get involved, or you have any questions about the study, please contact

News archive

March 2018

Understanding Chordoma: A National Cohort Study

December 2017

Congratulations to Professor Adrienne Flanagan

August 2017

Why do one event when you can do two!

May 2017

UK chordoma patient choose Prague for his PBT...UK's first high-energy proton beam machine in...New Malden Farmers Market supports Chordoma UK

April 2017

Spring 2017 update from Chordoma UK and...Emma Holloway and "Team Chordoma" raises some...Thank you to the Tanner TrustParis marathon runner Alex raises almost...Charlotte raises £900 for Chordoma UK...Another London Marathon run for CUK

October 2016

What has McDonald's & chordoma got in common?...

August 2016

Chordoma Biobank coordinator Clare Unwin...

June 2016

Clare Unwin Joins CUK / UCL Cancer Institute..

January 2016

Chordoma UK funds UCL Cancer Institute Biobank...2016 London Marathon team runners - Ed and...

November 2015

You've broken the £400,000 milestone!

October 2015

CUK founders Gerald & Susan Fitz-Gibbon at...Still plenty of time to register for the Milan...

September 2015

Well done to Aimee & Steve with another...What an amazing fund raising weekend it was...Guitars on The Beach - another huge success...

July 2015

Angela's travels with her tumour.....Sean runs the the 8.5 mile Sutton fun run and...Aimee and Steve run the "Nuts Challenge for...

April 2015

GlobeImmune Announces Opening of Randomized...

March 2015

Oliver and Kate run their first marathon for...Wow….. $1/2m raised so far!

January 2015

The simple math that explains why you may (or...A great start to 2015

December 2014

Sue Puddicombe does it again!With the state of cancer diagnosis a source of...John Baron MP, chairman of the All Party...John Baron MP hosts and addresses ‘Cancer52’...

November 2014

Updating James's Story........ Exceptional Wallace Collection fundraiser for...Chordoma UK receives a bequest of £10,000.00News from GlobeImmune Inc following their...

October 2014

Some facts, figures and a little trumpet...Hollywood here we come…..Lord Darzi formally unveils plans today to...Tim runs for Chordoma UK

September 2014

Central London Gallery Event...

August 2014

With a quite extraordinary result for...Sarah Holdsworth - runs like mad for Chordoma...

June 2014

Dinner Dance, Ferrari's Country Hotel,...Reception at St James's PalaceFunds are needed NOW to develop new therapies...Raising funds for research and awareness...

May 2014


April 2014

Getting close to £100k !

March 2014

RAT RACE DIRTY WEEKEND. Ginny Major goes for it!The LONDON MARATHON.. Freddie, Joanne and...HAPPY BIRTHDAY TO US, HAPPY BIRTHDAY TO US.....Plans now being made for the Great River Race...Lots happening this spring.....

September 2013

NEW CHORDOMA UK WRISTBANDS AVAILABLE.ChordomaUK participating in London's 21 mile...

August 2013

Blood transfusions during cancer treatment... ...Imatinib.. (Glivec in the UK) often talked...New Initiative Launches to Organize the UK...Welcome Lisa....

June 2013

Researchers at Oxford University Hospitals are...Identification of repurposed small molecule...National Cancer Institute Opens First...Chordoma UK now joined the Cancer52 Alliance...Walkers raise over £2,500.00 for Chordoma UK

April 2013

Mail on Sunday article raises awareness

February 2013

Chi-chi Nwanoku & friends Chamber Concert benefitResearch - what have we achieved so far
Get involved!

Help us raise money to fund more research into Chordoma