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The Understanding Chordoma national cohort study

The Understanding Chordoma national cohort study has finished recruiting participants after four years. Participants will now be followed up for at least a further four years. With 142 patients recruited, this will make the Understanding Chordoma study, supported by Chordoma UK and the Chordoma Foundation, the largest study of chordoma patients to date in the world. We would like to thank all the patients, families, healthcare workers and research staff across the UK who have made this possible - but it’s not over yet!

What will we find out from this study?

The information gathered from this study will allow us to have a greater understanding of how a diagnosis of Chordoma impacts on the lives of patients and their families. We will learn directly from patients what they would like to see improved About their treatment. Armed with this information we can find ways to improve the care provided to patients with Chordoma.

More information to follow next week!


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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.

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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.

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