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About the Spider

A multisystemic impact scale for the symptoms of patients with joint hypermobility

Hypermobility can affect people in many ways, with individuals reporting different symptoms and severity of these symptoms. Some of the common symptoms associated with hypermobility include pain, fatigue, musculoskeletal symptoms such as joint instability and altered sensation, difficulty with digestion, bowel and bladder function, heart problems including POTS, anxiety and depression.

 

The Spider questionnaire asks questions about eight commonly reported symptoms associated with hypermobility and the impact that they are having on your life. At the end of the questionnaire, a score out of 100 will be given for each domain. A summary of your results can be drawn on a 'Spider's web'. This allows you and the healthcare professionals involved in your care to understand which symptoms are troubling you most and will help healthcare professionals to direct your care plan.

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Professor Jane Simmonds

University College London (UCL) Great Ormond Street Institute of Child Health

UCL Hospital NHS Trust

London Hypermobility Unit, Central Health Physiotherapy​

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Ellen Ewer

University College London (UCL)​​​

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Dr Inge De Wandele

Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium

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Dr Hanadi Kazkaz

University College London (UCL) Great Ormond Street Institute of Child Health

UCL Hospital NHS Trust

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Dr Nelly Ninis

St Mary’s Hospital, Imperial Hospital NHS Trust, London, UK,

The Spider Team

Professor at UCL and clinical specialist physiotherapist in EDS and hypermobility spectrum disorders. Professor Simmonds is part of the initial team who created the Spider questionnaire and has been Principal Investigator on all Spider research projects.

Specialist paediatric physiotherapist and associate research assistant at UCL. Ellen has worked on validating six of the eight Spider domains with adolescents and all eight domains with adults. She is also establishing reliability, factor structure and minimal clinically important differences of the Spider.

Postdoctoral researcher and specialist physiotherapist. Dr De Wandele is part of the initial team who created the Spider questionnaire. She has expertise in Ehlers Danlos Syndromes (EDS), Cardiac Dysautonomia. Her PhD focused on cardiac dysautonomia in EDS.

Consultant Rheumatologist. Dr Kazkaz is part of the initial team who created the Spider questionnaire with specialist input in relation to the gastrointestinal and urogenital questions. 

Consultant paediatrician with a special interest in dysautonomia and multisystem implications. Dr Ninis is part of the initial team who created the Spider questionnaire with multisystem input particularly related to the fatigue, gastrointestinal and urogenital question. She has published an international consensus paper on dysautonomia in adolescents

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Dr Peter Rowe

John Hopkins University, Baltimore, USA,

Professor of Paediatrics. Professor Rowe is part of the initial team who created the Spider questionnaire. His expertise is in dysautonomia and fatigue and has published widely in this field.

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Dr Robby De Pauw

Statting, Ghent, Belgium

Physiotherapist and a post-doctoral researcher at Sciensano and Ghent University. Dr De Pauw has provided statistical support throughout the Spider validation and has created the Spider application.

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Eudora Tang

National University Hospital, Singapore

Specialist Paediatric physiotherapist has successfully conducted validation of two domains of the Spider (Pain and Fatigue) as part of her MSc at UCL

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Dr Lies Rombaut

Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium

Physiotherapist and senior researcher, whose research focuses on the clinical aspects of the Ehlers-Danlos syndromes, specifically hypermobile EDS, and hypermobility spectrum disorders. Lies offered guidance throughout the Spider validation process with adolescents.

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Victoria Busby

UCL Great Ormond Street Institute of Child Health, UK

Buckinghamshire Healthcare NHS Trust

Specialist paediatric physiotherapist. Vicki has validated the Spider’s total score in adolescents and explored the strength of association between symptoms in each of the eight Spider domains and their impact on daily life. 

Physiotherapist at Central Health Physiotherapy specialising in complex upper limb disorders and lecturer at UCL. Cathy supported validation of the anxiety and depression domains of the Spider with adolescents.

UCL Great Ormond Street Institute of Child Health, UK

​London Hypermobility Unit, Central Health Physiotherapy, UK

Cathy Barrett

Research funding

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Recruitment Support

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