Research

We are building research funds to support our priority research areas of pain management, EDS and the gut, autonomic dysfunction and measuring outcomes and healthcare utilisation. We also help researchers to recruit for high quality, ethically-approved studies we believe will be of interest to our community. If you would like to donate towards any of our research funds please use the form below.

Below are details on current and completed research projects we are funding or supporting. You can donate to any current research project that is being funded with EDS UK funds by clicking the donate to this project button.

Comprehensive Assessment of Nutrition and Dietary Intervention in Hypermobile Ehlers-Danlos Syndrome – the CANDI-hEDS study

Researcher
Professor Qasim Aziz, Dr Rabia Lalani & Dr Asma Fikree at the Wingate Institute of Neurogastroenterology, Barts & The London School of Medicine & Dentistry, Queen Mary University of London and Professor Peter Gibson of Monash University, Melbourne.

Summary

Gastrointestinal symptoms are common among people with hEDS and HSD and often lead to restricted food choices in an attempt to avoid symptoms. Professor Aziz’s team sees this often in their neurogastroenterology clinic yet no research has been done to investigate the impact of dietary restrictions on achieving adequate nutrition. The study, titled ‘Comprehensive Assessment of Nutrition and Dietary Intervention in hEDS - the CANDI-hEDS study’ has been designed in three phases and will be open to all EDS UK members with hEDS or HSD, along with patients from Professor Aziz’s clinic.

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The impact of hypermobile Ehlers-Danlos syndrome, diagnosis delay and prescription opioids on alcohol use disorder

Researcher
Siobhan Massey & Dr Richard Jagger, University of Bolton

Summary

The aim of the study is to explore alcohol use in individuals diagnosed with Ehlers-Danlos syndrome (EDS). To take part you must have a diagnosis of EDS (any type), experience chronic pain (pain that has persisted in at least one area of the body for a minimum of 6 months) and be aged 18 or over.

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‘Chronic illness in young adulthood: An exploration of the experiences of young adults with Ehlers-Danlos syndrome’.

Researcher
Sophie Cresswell, Occupational Therapy student, Leeds Beckett University

Summary

The study aims to develop an understanding of the experiences of Ehlers-Danlos syndrome in young adults (between 18 and 30 years old) and explore what support and barriers impact occupational engagement. This study is a mixed methods design using online questionnaires and 1-1 interviews to explore the impact of Ehlers- Danlos syndrome on occupational engagement.

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An investigation of beliefs in people with hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD)

Researcher
Eloise Crowson and Dr Bridget Dibb, School of Psychology, University of Surrey.

Summary

What people think and how they feel about their illness has been found to be important in gaining a deeper understanding of the illness and how it relates to quality of life. The aim of this research is to investigate the illness beliefs of individuals with hEDS or HSD in more detail and whether they are associated with the quality of life of adults with these conditions, as this has not previously been examined.

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Sibling experiences of hypermobililty spectrum disorders (HSD) and Ehlers-Danlos syndromes

Researcher
Sharina Nathan & Dr Fran Smith, Department of Psychology, City University, London.

Summary

This study is interested in sibling experiences of the conditions.  The research aims to increase awareness of the conditions, understand siblings’ experiences and inform professionals from various fields, how they can support siblings, in addition to giving siblings a voice. 

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Voice, swallowing and acid reflux in Ehlers-Danlos syndromes and hypermobility spectrum disorder

Researcher
Hannah Williams and Dr Shashi Hirani, City University, University of London

Summary

The purpose of this research is to explore the frequency and severity of voice difficulties, swallowing difficulties and acid reflux in people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD). To participate you will be asked to complete an online survey.

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An exploration of parents’ perceptions of lower urinary tract dysfunction treatments and quality of life of children with symptomatic joint hypermobility and hypermobile Ehlers-Danlos syndrome

Researcher
Marianna Veriki, University College London.

Summary

Researchers are looking for parents to volunteer to take part in a survey about bladder problems in children who have been diagnosed with symptomatic joint hypermobility or hypermobile Ehlers-Danlos syndrome (hEDS).

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The effect of an online mindfulness intervention on the pain experience in Ehlers-Danlos syndrome.

Researcher
Fay Harrison and Dr Paul Lattimore, Liverpool John Moores University

Summary

The researchers are looking for participants to take part in a study looking at the effects and feasibility of mindfulness on the pain experience in EDS, hypermobility spectrum disorder (HSD) and joint hypermobility syndrome (JHS).

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Quality of life and social support for adults living with rare skin conditions

Researcher
Sondra Butterworth, Department of Psychology, University of Chester.

Summary

This study will evaluate the relationship between quality of life and social support for adults affected by a rare genetic skin condition (such as one of the Ehlers-Danlos syndromes).

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Testing a new screening tool to assess the impact of hypermobility in young people

Researcher
Ellen Ewer & Dr Jane Simmonds, UCL Great Ormond Street Institute of Child Health

Summary

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 for problem hypermobility. They have developed a new tool called The Spider - Hypermobility Impact of Hypermobility Scale. It is called ‘The Spider’ because there are 8 different symptom domains (parts). The researchers are currently testing the anxiety and depression parts. The project has University College London ethics approval.

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