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Understanding Chordoma: A National Cohort Study

Firstly, a special thank you is owed to the people who have contacted us since the last newsletter.  Please feel free to feed back on anything in this Newsletter.

Understanding Chordoma: A National Cohort Study opened in January 2018 at 15 hospitals in England and Wales (see map below). The study aims to understand better how chordoma develops, how and why it progresses, and its response to established and to new treatments. To achieve this we are undertaking an ambitious project inviting all patients with chordoma to participate. The study involves keeping in touch with patients and monitoring their health, and their needs; we will also ask for samples of tumour tissue removed during operations and blood samples. By running tests on these samples we hope to learn more about what makes chordoma grow. Armed with this information we will be better placed to improve the lives of patients with chordoma. 

To date, 49 patients have enrolled in the study but our aim is to include all patients in the UK: we believe that this is about 300 in total but finding out exactly how common the disease is part of this aim. Keeping track of such a large number of individuals and ensuring that blood and tissue samples reach the lead site at the Royal National Orthopaedic Hospital (RNOH) in a timely fashion is made possible by Tamanah Fayzan, the Chordoma Patient and Biobank Coordinator, funded by Chordoma UK. 

If you have a diagnosis of chordoma and you wish to participate in the study, we suggest that you check on the map below to see if your hospital is already one of the sites in this study.  If your hospital is not on the map, please contact us and we can approach the hospital and see if they would be interested in joining the study.  If your hospital is already on the list we would suggest that you speak to your doctor or nurse and show them the Patient Information Sheet – you can get this by clicking on this link or contacting Tamanah Fayzan ( Alternatively you can use this email address or ring 0208 909 5347 for further information or with your questions.

The Understanding Chordoma: A National Cohort Study is open in the following hospitals

Benign Notochordal Cell Tumour

Benign notochordal tumours are small ‘spots’ seen in the spinal bones.  In the human embryo there is a rod-like structure, called the notochord, running along the length of the embryo which aids the development of the spinal column.  The notochord normally disappears before birth but it is thought that occasionally it does not disappear completely and the remnant becomes a Benign Notochordal Cell Tumour (BNCT). With increasing resolution in the scans we use, doctors are seeing BNCT more commonly than before. However, there is not much information available about BNCT and it is not known how best to monitor these individuals.  

With support from Chordoma UK, we want to gather more information about BNCT. To achieve this we need your help and we are organising a workshop at which patients with chordoma, or BNCT, will work with us to design leaflets and questionnaires for patients and clinicians to find out more about BNCT. 

Would you be interested in taking part in this workshop?  

It would involve attending a meeting in central London at the beginning of March, it will not take more than 2 to 3 hours. If you cannot attend the Workshop, we could also send you the questionnaire and leaflets for your feedback.

Travel costs to the workshop would be covered and refreshments provided. We are seeking 6 volunteers. If you would be interested in taking part, please get in touch with Dr Inga Usher (, a Chordoma UK-funded Clinical Research Fellow working with Professor Adrienne Flanagan and Professor David Choi.

News archive

February 2019

Understanding Chordoma: A National Cohort Study

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
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