Completed

These are completed research studies both carried out by EDS UK and promoted by EDS UK.

EDS neurogastroenterology research nurse

Researcher
Professor Qasim Aziz, Queen Mary University of London and The Royal London Hospital

Summary

We were proud to fund a 12 month research nurse post in the Neurogastroenterology Clinic at the Royal London Hospital. The post supported a research programme studying the gut problems that occur in patients with EDS.

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Incidence of anxiety and depression in hypermobile EDS (hEDS) compared to rarer types of EDS

Researcher
Asya Choudry, University of Cardiff

Summary

This study compared the incidence of depression and anxiety in individuals diagnosed with different types of Ehlers-Danlos syndrome, using an online survey. It compared the rates of anxiety and depression in participants diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) with those diagnosed with the rarer types of EDS (e.g. classical EDS or vascular EDS).

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Connection between hypermobile EDS (hEDS) and bowel symptoms

Researcher
Professor Qasim Aziz, The Wingate Institute of Neurogastroenterology and National Centre for Bowel Research and Surgical Innovation, London.

Summary

This study examined the connection between hypermobile EDS (hEDS) and bowel symptoms. Bowel symptoms predominate in hEDS including constipation, post-meal fullness, bloating and difficulty swallowing.

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Cloudy with a chance of pain

Researcher
University of Manchester

Summary

Cloudy with a Chance of Pain is the world's first smartphone-based study to investigate the association between weather and chronic pain.

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Are people with joint hypermobility syndrome slow to stengthen

Researcher
May To and Dr Caroline Alexander

Summary

Knee pain and physiotherapy treatment are familiar to people who are hypermobile and in pain. To tackle the pain, hypermobile people are often advised to do strengthening exercises however, there is a common belief that it takes ages to strengthen.

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The Zebra in the Room: Examining the response of parents to schools’ adaptations for their children with Ehlers-Danlos syndromes in England

Researcher
Emma Jordan, PhD student, Department of Educational Research, Lancaster University

Summary

This study explored the experiences of a group of parents of children with Ehlers-Danlos syndromes attending mainstream primary and secondary schools in England. It examined the adaptations schools had provided and explored which were effective.

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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+.

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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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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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Feeling good despite Ehlers-Danlos – A positive psychology intervention for Ehlers-Danlos syndrome patients.

Researcher
Larissa Kalisch, Masters' Degree student, Anglia Ruskin University & Dr. Ilona Boniwell , Anglia Ruskin University.

Summary

The study aims to identify whether an online intervention based on positive psychology increases health, well-being and life satisfaction in patients suffering from Ehlers-Danlos syndromes. The intervention consists of topics such as strengths, kindness, gratitude, mindfulness, etc. lasting for one week and including activities, writing or reflection tasks.

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The interplay between diet and symptoms of hEDS

Researcher
Miss Molly Whitaker, Principle Investigator, University of Surrey

Summary

Gather a greater understanding about the interplay between diet and symptoms of hEDSv

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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.

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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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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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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.

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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.

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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.

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Life during diagnosis: the experiences of women with hypermobile Ehlers-Danlos syndrome (hEDS)

Researcher
Helen Harte, Prof. Hilary Thomas & Prof. Karen Beeton, University of Hertfordshire

Summary

This research aims to understand what the experience of diagnosis with hEDS (or EDS type III, EDS-HT) was like for women so that they can help health professionals better appreciate the impact that diagnosis has. The goals of the study are to develop new insights about how daily life is affected while waiting for a diagnosis of hEDS; to consider any challenges faced by women in receiving a diagnosis of hEDS and to support the experience of diagnosis for women who haven’t yet been diagnosed.

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Factors affecting function and quality of life in people with Ehlers-Danlos syndromes compared to other chronic health conditions

Researcher
Professor Leslie Russek, Jason Rinker, Lyndsay Bergus, Clarkson University, USA.

Summary

Researchers at Clarkson University (Potsdam, NY, USA) are seeking volunteers to complete a online survey. This survey will take about 30-45 minutes to complete. This study is looking at the factors that affect quality of life and function in people with Ehlers-Danlos syndromes or hypermobility spectrum disorder (EDS/HSD) compared to people with other chronic illnesses and people who are healthy.

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Exploring the role of sports participation in post-traumatic growth in individuals with acquired physical impairments

Researcher
Hanna Kampman & Dr Marcia Wilson, University of East London

Summary

The purpose of this research is to explore the role of sports participation in the process of post-traumatic growth. Post-traumatic growth is defined as positive changes in some areas of life as a result of a struggle with a major life crisis. Participants over 18 years old, from the UK, participating in sport and with an acquired physical impairment are invited to complete an anonymous online survey.

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Creating one of the largest research datasets for vascular EDS (vEDS)

Researcher
Dr Fleur van Dijk & Dr Neeti Ghali

Summary

Doctors at Northwick Park Hospital, part of the EDS National Diagnostic Service are creating a database which will bring together genetic and clinical information from adults and children with vascular EDS (vEDS) seen by the service. Bringing this valuable data together in one place for the first time will create one of the largest collections of vEDS data in the world.

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SCRIP Study: Exploring sleep and chronic pain

Researcher
Zoe Zambelli, University College London.

Summary

Are you an adult living with chronic pain? Researchers at University College London are inviting you to take part in a survey which will ask you about your chronic pain, sleep habits and any problems you have had in accessing treatments for your sleep problems.  From this survey, they hope to gain a better understanding about your sleep and how it relates to your health.

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Exercise, perceived stress and pain symptoms in hypermobile Ehlers-Danlos syndromes (hEDS)

Researcher
Duxshana Sivanesvaran & Dr Patrick Brady, University of Roehampton, London.

Summary

This research project aims to find out how exercise, diet, perceived stress and pain symptoms affect women with hypermobile Ehlers-Danlos syndrome (hEDS). Participants are invited to fill in an online questionnaire on exercise, perceived stress and pain symptoms.

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Exploring perceptions and experiences of exercise, physical activity and sport for males with hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS)’.

Researcher
Nuala Lloyd & Hayley Mills, Sheffield Hallam University

Summary

You are invited to take part in a study exploring perceptions and experiences of physical activity, exercise and sport for males with hypermobility spectrum disorder (HSD) or hypermobile Ehlers-Danlos syndrome (hEDS). As many studies have been conducted investigating joint hypermobility syndrome (JHS), EDS-HT, EDS type III, hypermobile EDS  (hEDS)  and hypermobility spectrum disorder (HSD) with many female participants and minimal or no male participants, this study aims to focus on just male experiences to see if experience is different for males and females. It also gives you a chance to go into depth about your experiences of physical activity, exercise and sport whilst living with  HSD, hEDS  or the other conditions listed above.

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Mobility and Quality of Life (MobQoL) project

Researcher
Dr Nathan Bray, Bangor University

Summary

The aim of this project is to find out how mobility (or being able to get around) affects quality of life. The term ‘quality of life’ can mean lots of  different things, such as happiness, life satisfaction and well-being.  Researchers at Bangor University have developed a questionnaire tool called MobQoL to measure how mobility affects quality of life. They now want to find out how accurate and reliable that tool is.

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Survey of people in the UK with EDS or HSD who have had surgery abroad

Researcher
Andrew Brodbelt & Mark Radon, The Walton Centre, Liverpool

Summary

Researchers at The Walton Centre in Liverpool want to find out how many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) in the UK have had surgery abroad and what the results of the surgery have been. They are inviting people who live in the UK and have EDS or HSD and who have had surgery outside the UK for their condition to complete a survey online.

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

Researcher
Eudora Tang & 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 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 pain and fatigue areas. The project has University College London ethics approval.

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Self-managing health conditions as a result of the pandemic and lockdown

Researcher
Prof Ann Hemingway, Prof Carol Clark, Dr Steve Trenoweth & Dr Swrajit Sarkar, Bournemouth University

Summary

This study aims to explore how people are managing their new or pre-existing health conditions following Covid-19, the lockdown and subsequent changes to the NHS. The researchers wish to learn from your experiences and suggestions to better support health care in the future.

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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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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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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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More information on EDS research

Details of current and completed research projects