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.

 

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.

 

The full link to the survey is: https://redcap.slms.ucl.ac.uk/surveys/?s=DJALT43L8D

Screencap of provided .pdf poster in shades of blue and purple. The poster text is reproduced below the image.

Poster Text is as follows: 

STUDY PARTICIPANTS NEEDED

WHAT IS THIS PROJECT ABOUT?
A group of researchers have designed a new questionnaire:‘The Spider’. This tool is designed for those with symptomatic hypermobility and looks at both physical and emotional aspects. The scores are then plotted onto a ‘Spider’s web’, making it easy to see what is impacting your life the most. We hope to be able to use one tool to assess many symptoms to ensure your care considers all of
these important aspects. Before using it routinely, we need to make sure this tool measures what it is supposed to. In this project, we are reviewing the sections of the tool which look at emotions.

WHAT WOULD YOU HAVE TO DO?

We will ask you to complete a questionnaire about your emotions. This will probably take around 15 minutes to complete and would be done online, in your own home. We will provide resources regarding your emotions, and what to do if you feel this raises any concerns about your mental health.


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

Click the link below to complete the questionnaire
https://redcap.slms.ucl.ac.uk/surveys/?s=DJALT43L8D

CONTACT DETAILS:
Researcher: Ellen Ewer - [email protected]
Supervisor: Jane Simmonds - [email protected]
Ethical approval: UCL REC (project ID 19629/001)
Email: [email protected], phone: 0207679871