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.

Diet and EDS research fund

Researcher
Professor Qasim Aziz at the Wingate Institute of Neurogastroenterology, Barts & The London School of Medicine & Dentistry, Queen Mary University of London.

Summary

If sufficient funds are raised, this research will look at the effects of changes to diet on the symptoms of hypermobile EDS (hEDS).

View

Exploring the sport participation legacy of the London 2012 Paralympic Games

Researcher
Christopher Brown (PhD student), School of Sport and Exercise Sciences, University of Kent

Summary

Research suggests sport participation has not substantially increased since the London 2012 Paralympic Games. The purpose of this research is to understand why the 2012 Paralympic games has not been able to sustainably increase sport participation of disabled people. An online questionnaire is used to get the perspectives of disabled people aged 16+.

View

‘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.

View

Healthcare experiences of parents who have a child with suspected or diagnosed hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder

Researcher
Lauren Purdy & Dr Gemma Pearce, Coventry University

Summary

The study aims to capture the experiences of parents in the UK who have a child with suspected or diagnosed hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD). The study involves completing an online survey. During the survey, parents can also express interest in an optional follow-up interview.

View

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).

View

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).

View

Experiences of childbearing and maternity care among women with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders

Researcher
Dr Gemma Pearce, Dr Sally Pezaro, Dr Emma Reinhold & Lauren Purdy, Coventry University.

Summary

This study aims to identify the childbearing outcomes associated with hEDS or HSD, explore experiences of maternity care among women with hEDS/HSD and identify ways in which maternity care could be improved for women with hEDS/ HSD. Participation is via on online survey.

View

Maternity staff’s experiences and understanding of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder

Researcher
Dr Gemma Pearce, Dr Sally Pezaro, Dr Emma Reinhold & Lauren Purdy, Coventry University.

Summary

Researchers at Coventry University are conducting this research to explore awareness and knowledge of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) among maternity staff to explore what decisions maternity staff may make when caring for a women with hEDS/HSD and to indicate how maternity staff could be supported to care for women with hEDS/HSD.

View

Are muscles controlled differently in people with symptomatic generalised hypermobility?

Researcher
Dr Caroline Alexander, Dept of Physiotherapy, Charing Cross Hospital

Summary

This study aims to find out if people with generalised hypermobility which causes them problems (i.e. is symptomatic) control their muscles differently. Adults with HSD or hEDS and knee pain are eligible to take part.

View