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 (Tamanah.email@example.com). 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 (firstname.lastname@example.org), a Chordoma UK-funded Clinical Research Fellow working with Professor Adrienne Flanagan and Professor David Choi.