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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


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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.

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