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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Natasha
Ajraam
natasha.ajraam@nhs.net
Prof
Adrienne
Flanagan
adrienne.flanagan@rnoh.nhs.uk
Malignant neoplasms of bone and articular cartilage
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
Chordoma is a very rare, slow growing tumour that can occur anywhere from the base of the skull to the tip of the spine and affects 1 in 800,000 of the UK population. Currently very little is known about the condition.
‘Understanding Chordoma: A National Cohort Study’ is designed to better understand chordoma. Using samples of tissue and blood from patients we are investigating in great depth including genetic analysis why it develops in the way that it does why it grows, why some chordomas recur, what makes it spread, why certain people develop it and what makes some chordomas behave more aggressively than others. We will also investigate biomarkers (an identifier in the blood) that may allow earlier information on the risk of recurrence and metastatic disease than is currently available and provide a more accurate predictor of the behaviour of the disease (prognosis).
Additionally, by comparing patient symptoms with findings from imaging (x-rays and scans) and tissue and blood analysis in the study aims at to evaluate current treatments with the aim of improving patient care.
Some of the tissue samples may be collected for specific projects, however the consent provided by tissue donors permits long-term storage of samples to be used for future projects if the sample size allows for this. All donations to the projects are considered to be a gift for the benefit of other patients and future research.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cohort study;
You can take part if:
You may not be able to take part if:
Private (non-NHS) patients Prisoners Patients unable to give informed consent Known Human Immunodeficiency Virus (HIV), Hepatitis B Virus (HBV), Hepatitis C Virus (HCV) or syphilis infection
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by ROYAL NATIONAL ORTHOPAEDIC HOSPITAL NHS TRUST and funded by Bone Cancer Research Trust; Chordoma Foundation (USA); .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 36047
You can print or share the study information with your GP/healthcare provider or contact the research team directly.