Impact of Hypermobility Questionnaire for Adolescents. Ages 13-18

Principal Investigator: Dr Jane Simmonds
Co-Investigator: Eudora Tang

Purpose of developing a new hypermobility multisystem symptom questionnaire 'The Spider'

A team of specialist clinicians and researchers has recently developed 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 Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndromes (hEDS). This questionnaire aims to help guide treatment pathways and to monitor the impact of treatment for people with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndromes (hEDS).

Before The Spider can be used in clinical practice or research, it is important that it can accurately identify the specific symptoms (problems) and measure the impact of these symptoms on a person's life. This is why we are asking for your child/ children's help by completing this questionnaire.

We need young people with and without HSD/ hEDS to complete the questionnaire.

What can be expected from participating?

The questionnaire will take less than 10 minutes to complete.

Please note we need your child (young person) to answer the questions as best as they can. If they can't understand something or need help, the parent/ guardian/ caregiver can help.

We will not collect any personal identifying information and all questionnaire answers will be anonymous and confidential.

The decision to take part in this study or to stop participation is entirely up to you and your child. 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. Incomplete questionnaires will not be analysed.

By responding to this survey, you and / your child agree to have your responses included in the research analysis and results summaries. The results of this research will be written up in a UCL Master's Degree thesis and may also be presented at conferences and in a scientific journal.

Link to the survey and more information here
https://buff.ly/3fPh3B7