INSIGHT-HM v1
Research type
Research Study
Full title
Investigating the relationships between functional magnetic resonance imaging, subjective and objective clinical findings in people with hypermobile-type Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.
IRAS ID
261513
Contact name
Jane Simmonds
Contact email
Sponsor organisation
University College London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
It has been suggested that symptoms such as headache, neck pain, nerve pain in the arms, and disturbances of heart rate and blood pressure, can arise from the uppermost neck joints. These symptoms can be frightening and highly debilitating. In hypermobile people, joint instability causing pressure on the exiting spinal cord and nerve roots is a suggested cause.
Clinically, it is difficult to establish if this is truly the case using physical examination and/or imaging. It is not clear which tests and measures taken in clinic by doctors and physiotherapists are useful to help guide decisions on how to help people manage their symptoms. Nor is it known if or how these clinical tests and measures relate to upright dynamic magnetic resonance imaging (uMRI) findings.
UMRI is used to investigate such symptoms, but there is a lack of evidence as to which measurements, if any, are truly linked to the presenting symptoms. It is unknown if any of these measurements are also positive in hypermobile people without symptoms. If the latter is true, then the uMRI results could be misleading for people with symptoms.
This study aims to answer these questions by comparing clinical examination with uMRI of the neck/skull region in two groups with confirmed generalised joint hypermobility:
1. Those with symptoms that could be coming from the upper neck.
2. Those with no or minor reported neck problems.
Currently accepted clinical assessment and validated questionnaires will be used. The value of a new screening tool will also be assessed. A standard uMRI protocol already in use will be used.
Results will be compared between groups to determine if any of the measures consistently identify people with neck symptoms. This will allow clinicians to develop clinical practice guidance for assessment to help manage these truly awful symptoms.REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
23/NE/0082
Date of REC Opinion
30 May 2023
REC opinion
Further Information Favourable Opinion