Hypermobile EDS & HSD - assessing criteria in clinical practice
Research type
Research Study
Full title
Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder - Assessing Criteria and Their Modification in Clinical Practice.
IRAS ID
326793
Contact name
Helen Cohen
Contact email
Sponsor organisation
Royal National Orthopaedic Hospital
Duration of Study in the UK
1 years, 0 months, 31 days
Research summary
Ehlers Danlos Syndrome (EDS) is a group of genetic conditions, of which the hypermobile type is the most common. Diagnostic criteria introduced in 2017 improved how to diagnose Hypermobile Spectrum Disorder (HSD) and hypermobile EDS (hEDS). Since then there has been a growing commentary internationally from clinicians, organisations and institutions, and the EDS community about whether the 2017 International Criteria for hEDS need modifying to be more inclusive of other signs and symptoms and co-morbid conditions. Additionally, many question whether there is a meaningful difference between hEDS and HSD, and in what ways.
The purpose of this study is to explore which signs (physical visible changes in the body) and symptoms (such as pain and tiredness) best identify the conditions Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) compared to other conditions that cause widespread joint and muscle pain. With this information scientists will be able to update criteria that doctors currently use to diagnose these conditions, and improve treatment.
The study will recruit participants of >16 yrs with hEDS and HSD, and a comparison group of adults with other chronic pain conditions. Parental or guardian consent for those under the age of 18, and assent from individuals aged 16-17 years will be gained based on the study sites national requirements. The study will be conducted at hospitals and clinics seeing patients with EDS in the USA and UK.Participants will be asked questions about their condition, and take part in a general physical examination. The study will collect relevant data from their medical record including the results of any genetic tests that have been done. The study does not include any invasive procedures, or use of radiological imaging.
The study is anticipated to run until March 2024.
REC name
London - Queen Square Research Ethics Committee
REC reference
23/PR/1488
Date of REC Opinion
3 Apr 2024
REC opinion
Further Information Favourable Opinion