Understanding Chordoma: A National Cohort Study
Research type
Research Study
Full title
Guiding Chordoma Treatment Through Molecular Profiling: A National Cohort Study
IRAS ID
233430
Contact name
Adrienne Flanagan
Contact email
Sponsor organisation
Royal National Orthopaedic Hospital
Duration of Study in the UK
8 years, 0 months, 1 days
Research summary
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.
REC name
London - Bromley Research Ethics Committee
REC reference
17/LO/1688
Date of REC Opinion
8 Dec 2017
REC opinion
Further Information Favourable Opinion