Testing a new screening tool to assess the impact of hypermobility in young people

Ellen Ewer & Dr Jane Simmonds, UCL Great Ormond Street Institute of Child Health

Recruitment poster

Are you a parent of a young person aged between 12-17 years or a young person aged 18 who has been diagnosed with symptomatic hypermobility, hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD)?

 If so, researchers at UCL Great Ormond Street Institute of Child Health really need yours and/or your child’s help with the important development of a new screening tool to help guide treatment pathways and monitor change. The new tool is called The Spider because there are 8 different symptom domains (parts). The researchers are currently testing the anxiety and depression domains. The project has University College London ethics approval.

Do you/your child meet the following criteria?

  • Adolescent aged 12 to 18 either:
    • With symptomatic hypermobility (without another diagnosis such as inflammatory arthritis, a neurological condition such as cerebral palsy, or an unrelated joint or muscle injury).
    • Without symptomatic hypermobility – this may be siblings or friends of those with symptomatic hypermobility
  • Able to understand and communicate in English

Below is a link to a questionnaire for you/your children to complete. Parents or guardians of children aged 12-17 need to click on the link and give consent. Those who are 18 can consent for themselves. You need to open the link and consent, then have the children give their consent and fill in the questionnaire. It will take less than 15 minutes. All answers are anonymous and confidential. No personal identifying information is collected.

 The researchers need hypermobile and non-hypermobile young people aged between 12 -18 to complete this so please send to friends for their children to do. Large numbers are needed for the best research!

 For more information or to access the questionnaire click here.

Start date: 23/04/2021

Finish date: 31/05/2021

Should you have any queries about this study please use the details below:

Ellen Ewer

More information on EDS research

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