Current

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

RUDY Study: Rare diseases of the bone, joint and vessels study

Researcher
Dr M K Javaid & Professor R Luqmani, University of Oxford

Summary

The RUDY Study is open to those with rare disorders, as well their blood relatives. The study aims to understand more about all aspects of rare diseases of the bones, joints and/or blood vessels. These rare diseases affect less than 1 in 5000 people. Some of this new understanding will be used to develop new tests and treatments for patients with rare diseases of the bone, joints or blood vessels.

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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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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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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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A Qualitative Study to Investigate the Impact of Ehlers-Danlos syndrome (EDS) on Occupation

Researcher
Jessica James , occupational therapy student, Cardiff University.

Summary

The purpose of this study is to gain an understanding of how chronic conditions such as EDS affect a person’s occupations and occupational balance. People with Ehlers-Danlos syndrome (EDS) often experience symptoms such as dislocations, pain and other internal organ issues. This research aims to discover whether these symptoms affect a person’s occupations and the occupational balance of a person’s life and if they do, how do they affect a person’s ability to participate in their occupations and how does it affect a person’s schedule and balance of occupation.

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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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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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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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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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More information on EDS research

Details of current and completed research projects