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.

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 Asma Fikree & Dr Rabia Lalani 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

This research team requires people with hEDS or HSD for a study conducted at Queen Mary University of London to evaluate the role of diet and nutrition in symptoms. The study involves answering questionnaires online via email. All information will be anonymised and treated confidentially. Please see the Patient Information Leaflet for full details.

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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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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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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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Nutritional knowledge, attitudes and dietary behaviours amongst individuals with HSD and hEDS and associations with co-morbid GI symptoms and fatigue.

Researcher
Nikki Paiba and Miranda Harris, University of Worcester.

Summary

This study aims to look at relationships between nutritional knowledge, attitudes and behaviours in individuals with hypermobility spectrum disorders (HSD) or hypermobile Ehlers-Danlos syndrome (hEDS). Additionally, since gastrointestinal dysfunction and fatigue commonly coexist in individuals with HSD or hEDS, the study also aims to look for any associations between these nutritional factors and gastrointestinal symptoms and fatigue.

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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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The interrelations of pain and dizziness

Researcher
Dr Louisa Murdin, Dr Marousa Pavlou & Dr Roger Esson, King's College London

Summary

This is a research project being conducted by a team from Guy's and St. Thomas's Hospital and King's College London. It is aimed at people with pain or dizziness conditions. The purpose of this research project is to explore the relationships between symptoms of pain and dizziness.

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Investigating the mechanisms driving lower bowel symptoms in hypermobile EDS (hEDS)

Researcher
Anisa Choudhary & Prof. Qasim Aziz, Wingate Institute of Neurogastroenterology,  Blizard Institute, Queen Mary University of London.

Summary

This research is aimed at understanding the underlying causes of gastrointestinal (GI) symptoms in hypermobile Ehlers-Danlos syndrome (hEDS). Researchers will look at rectal (back passage) hypersensitivity in patients with and without inflammatory bowel syndrome (IBS)/hEDS overlap to see if there is a difference between the two groups.

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Coronavirus Chronic Conditions and Disabilities Awareness (CICADA) Study

Researcher
Professor Carol Rivas, Dr Kusha Anand, & Lorna Collins, UCL

Summary

Professor Carol Rivas at University College London (UCL) is leading an 18-month UK study on the impact of the COVID-19 pandemic on people’s health and quality of life. The project aims is to develop simple strategies, recommendations and easily adopted actions to improve future experiences, health and wellbeing outcomes, especially for those with chronic health conditions and who are from minoritised ethnic groups.

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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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Understanding the psychosocial aspects of living with classical Ehlers-Danlos syndrome

Researcher
Ruth Nicholson, Margaret Warren-Perry & Professor Marion McAllister, Cardiff University

Summary

Researchers are looking for individuals to take part in their study exploring what it is like for children and adults to live with classical Ehlers-Danlos syndrome. The researchers hope to gain greater understanding of the lived experiences of individuals with classical EDS.

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Living with hypermobile Ehlers-Danlos syndrome (hEDS) from the perspective of children aged 5-11 years

Researcher
Sheila Billings & Professor T. Watson, University of Hertfordshire

Summary

This research seeks to understand how children, aged 5-11 years, with hypermobile Ehlers-Danlos syndrome (hEDS),  perceive living with the condition and to explore the experiences of their parent/guardian, in looking after a child with hEDS. 

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The relationship with food: an exploration of the experiences of patients with gastroparesis

Researcher
Rebecca Babb and Dr Rebecca Keyte, Birmingham City University

Summary

This research aims to understand how a potentially restrictive diet may influence behaviours surrounding food. The study hopes to be able to use this research to provide recommendations to medical professionals who work closely with gastroparesis patients to enable a wider discussion surrounding this topic..

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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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