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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.

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.  

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

published paper in The Journal of
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

IRAS project ID:183090 

News archive

April 2019

My Day Out – Classic Car Outing 2019

March 2019

Notochordal Cell Tumours Workshop Chordoma research prize

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

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April 2017

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October 2016

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August 2016

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June 2016

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January 2016

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November 2015

You've broken the £400,000 milestone!

October 2015

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September 2015

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July 2015

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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

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November 2014

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October 2014

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September 2014

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August 2014

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

June 2014

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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

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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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