Craniocervical imaging in joint hypermobility disorders (version 1)
Research type
Research Study
Full title
Headache disorders and imaging of the craniocervical junction in joint hypermobility disorders
IRAS ID
309234
Contact name
Manjit Matharu
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2022/02/90, UCL data protection reference number
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
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.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
22/NE/0075
Date of REC Opinion
7 Jun 2022
REC opinion
Further Information Favourable Opinion