17/02/2024
Validating 'The Spider' research tool - Researchers need your help!
A team of specialist clinicians and researchers has developed a new patient questionnaire called ‘The Spider.’ The Spider has been designed to help identify the impact these symptoms have on a person’s daily life, guide treatment pathways and monitor the impact of treatment for people with hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS).
The research team has ‘validated’ The Spider through several previous surveys and studies. Now they know that The Spider measures people's symptoms as they had hoped. Thank you to everyone who has taken part in the surveys so far in this research series — researchers could not make progress without your support!
The research team is now making sure that The Spider can measure how symptoms change over time. They are looking for 300 participants who have a diagnosis of HSD or hEDS to take part. Participants must be between the ages of 13 and 65 and must not have the following conditions:
- 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.
The researchers 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. They 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.
They will ask you to share your email address so we can send you reminders to complete each survey and would be grateful if you could complete all three surveys.
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
