Final Stage Spider Validation

Are you a person aged between 13 and 65 years who has been diagnosed with symptomatic hypermobility, hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD)?

A team of specialist clinicians and researchers have been developing a new patient questionnaire called ‘The Spider’. The Spider has been designed to assess the impact of various symptoms (or problems) experienced by people with HSD and hEDS. This questionnaire hopes to help identify the impact these symptoms have on a person’s daily life, help decide best treatment and monitor the success of treatment for people with HSD and hEDS.

Before The Spider can be used in clinics and in research it is important that we know that it can measure whether someone has symptoms (problems), how they impact their life, and if the symptoms change over time. We have ‘validated’ the Spider through several studies which you may have taken part in. Now we know that the Spider measures peoples symptoms as we had hoped. The final step of this process is to make sure that the Spider can measure how symptoms change over time.

Who can participate?

We need 300 adolescents and adults with HSD/ hEDS to complete the questionnaire. We are looking for participants between 13 and 65, with HSD/hEDS and who do not have conditions such as:

Neurological conditions unrelated to HSD/hEDS such as stroke, multiple sclerosis, cerebral palsy and acquired or traumatic brain injury. Please note, people with co-existing neurodivergence (Autism Spectrum Disorder/Attention Deficit Hyperactivty Disorder/Developmental Coordination Disorder) are NOT excluded and are encouraged to participate.

Rheumatological/inflammatory conditions unrelated to HSD/hEDS such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis.

Unrelated joint/muscle problems: post-surgery, traumatic injury. Please note people with co-existing POTS or orthostatic intolerances and age related osteoarthritis are NOT excluded.

What can be expected from participating?

We will ask you and/or your child to share your experiences with many symptoms including pain, fatigue, digestion, bladder and bowels, dizziness and fainting, and your mental health. We will ask you to take this survey three times in total, the second survey a week after the first, and the final survey three months later. We will ask you to share your email address so we can send you reminders to complete each survey and we would be grateful if you could complete all three surveys. Your email address will be stored on a secure server only accessible by the research team and will not be shared with any third parties. Your email address will not be downloaded or linked to your data during data analysis.

The decision to take part in this study or to stop participation is entirely up to you. This decision will not affect your medical care in any way. Upon submission of the questionnaire, the answers will be put into a database and analysed. Should you decide you no longer want to participate in the study you can contact researchers to ask them to remove your data by providing the email address used to complete the survey. By responding to this survey, you agree to have your anonymous responses included in the research analysis and results summaries. The results of this research will likely be presented at conferences and in scientific journals.

If you have any further questions to clarify regarding the research or the questionnaire, please contact Ellen Ewer via email: ellen.ewer.20@ucl.ac.uk or Professor Jane Simmonds at: jane.simmonds@ucl.ac.uk

Here are the links to the questionnaires for you to complete. Once you open the link you will find further information about the study and will be required to consent to participating before you can access the survey. 18-year-olds can choose either the adolescent survey, or the adult survey.

Aged 13 to 18 (adolescent survey): https://redcap.idhs.ucl.ac.uk/surveys/?s=X4NC37WXTN89W8TH

Aged 18 to 65 (adult survey):  https://redcap.idhs.ucl.ac.uk/surveys/?s=WCWCJM3F8XEWF7MR

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Study participants needed  

Great Ormond Institute of Child Health  

Ellen Ewer and Jane Simmonds  

What is this project about?  A group of researchers have designed a new questionnaire ‘The Spider’. The  Spider is designed for people with symptomatic hypermobility and looks at the common symptoms that people may have, and how this affects their life. Once the questionnaire is completed, a ‘Spider’s web’ is drawn making it easy to see what affects the person’s life. We hope to use this tool to look at the eight most common symptoms to ensure each person's care considers all these important aspects. 

You may have already seen other studies looking at whether the Spider questions ask for the right information, but now we need to check whether we can use the Spider to measure the change in symptoms over time.  

What would you have to do?  

We will ask you to complete three surveys which will each take under 20  minutes and can be done at home. We will ask you to do survey 1, survey 2 a week later, and 3 after 3 months.  We will ask you to share your email address so we can send you email reminders for each survey.  The surveys will ask about your pain,  energy levels, mental health, digestion and bowel, bladder symptoms, lightheadedness/dizziness, and about your muscles, joints, and nerves. We will ask about your quality of life and whether your symptoms are getting better or worse.  

Contact details:  

Ellen Ewer – ellen.ewer.20@ucl.ac.uk  

Prof. Jane Simmonds – jane  .simmonds@ucl.ac.uk  

Ethical approval: UCL REC (project ID: 19629/002  

Email: ethics@ucl.ac.uk

Phone: 02076798717  

Are you eligible?  Do you meet the following criteria?  Aged between 13 and 65 either:  With symptomatic hypermobility  (without neurological conditions,  rheumatological/ inflammatory  conditions or joint/muscle problems  unrelated to HSD/hEDS – please  see the survey link for more details)  Able to understand and  communicate in English