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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.
Manjit
Matharu
manjit.matharu@ucl.ac.uk
Manjit
Matharu
manjit.matharu@ucl.ac.uk
Congenital malformations and deformations of the musculoskeletal systemSystemic connective tissue disordersGeneral symptoms and signs
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People with joint hypermobility disorders, including hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder, frequently suffer from headaches, neck pain and other neurological symptoms. However, the cause of these symptoms is poorly understood. Hypermobility of the craniocervical junction has been proposed as a major cause of these symptoms, termed cervicomedullary syndrome (CMS). It is purported that this can be diagnosed by upright dynamic magnetic resonance imaging (MRI) and treated by craniocervial fixation surgery, however this imaging technique is yet to be validated.
We plan to perform an upright dynamic MRI in three equal groups of 40 participants (120 in total): 1. Healthy controls without joint hypermobility or symptoms of CMS; 2. people with joint hypermobility disorder (either hypermobile EDS or hypermobility spectrum disorder) according to published criteria but no symptoms of CMS; and 3. Joint hypermobility disorder (either hypermobile EDS or hypermobility spectrum disorder) who have symptoms of CMS. We will record the presence of craniocervical junction abnormalities and radiological measurements of hypermobility.
We will be the first group to establish normative ranges for the assessment of the craniocervical junction on upright dynamic MRI. We will be able to show to what degree this region of the body differs in people with joint hypermobility disorders compared to healthy controls. By comparing people with hEDS with and without symptoms of CMS we can study which imaging abnormalities are most related to symptoms.
The main hypothesis of this study is that craniocervical hypermobility in patients with joint hypermobility disorders would cause structural brainstem or spinal cord damage. If our results were in line with this hypothesis, then we would provide evidence supporting larger surgical trials that will help to deliver improved care to highly disabled patients. Alternatively, we would provide data against potentially unnecessary invasive and expensive neurosurgical treatment.
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: Cross-sectional;
You can take part if:
You may not be able to take part if:
1. Previous cranial or cervical spine surgery 2. Any contraindication to MR imaging 3. Inability to understand study information in order to provide consent: this may include those with cognitive impairment or language barrier
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 University College London and funded by The Ehlers-Danlos Society .
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Read full details
for Trial ID: CPMS 52621
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