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.

How to have your study promoted

Please email your request to research@ehlers-danlos.org.

At this time we are only accepting EDS/HSD specific research study requests for promotion to the EDS UK community. This inbox is monitored monthly so please do get in touch with as much notice as possible. Please do make sure you send all of the following information to help us help you:

  • Study name and one or two sentence study summary.
  • Start and end date of your study.
  • Confirmation this is EDS/HSD specific research.
  • How many participants you are looking to recruit.
  • Information on how you will undertake your research.
  • Copy of your ethics approval.
  • Copy of your promotional material including text for our website.
  • Confirmation that you will send your results and a 200 word summary of your conclusions for us to share with our community once the study is complete.

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.

Testing ‘the Spider’, a new screening tool to assess the impact of hypermobility in Adults

Researcher
Professor Jane Simmonds & Ellen Ewer, UCL Great Ormond Street Institute of Child Health. UCL Research Ethics Committee Approval ID Number: 19629/002

Summary

A team of specialist clinicians and researchers has developed a new patient questionnaire called ‘The Spider’. The Spider has been designed to assess the impact of various symptoms (or problems) experienced by people with HSD and hEDS. This questionnaire aims to help identify the impact these symptoms have on a person’s daily life, guide treatment pathways and monitor the impact of treatment for people with HSD and hEDS.

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Factors affecting quality of life and symptom severity within gastroparesis

Researcher
Rebecca Babb, Dr. Rebecca Keyte, Professor Helen Egan and Professor Michael Mantzios Birmingham City University.

Summary

You are being asked to take part in a research study exploring quality of life and symptom severity within gastroparesis and whether self-compassion, mindfulness and mindful eating may influence this relationship.

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Living with hypermobility: A qualitative study of childhood and young adulthood experiences, impacts and coping strategies

Researcher
Meghna Nebhwani and Professor Jane Simmonds, University College London

Summary

The purpose of this study is to gain a better understanding of the experiences of children and young adults living with hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS), including their experiences of healthcare and the coping strategies they use.

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Eating Behaviours, Types of Foods Consumed and Impact of Mindful Eating in Individuals who have Gastroparesis

Researcher
Rebecca Babb, Dr. Rebecca Keyte, Professor Helen Egan and Professor Michael Mantzios, Birmingham City University.

Summary

this questionnaire-based study is exploring eating behaviours within gastroparesis, types of foods that you consume and whether you engage in any mindful eating behaviours. This research aims to understand eating behaviours in gastroparesis and how this may impact foods consumed and mindful eating within gastroparesis.

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Exploring health-related quality of life in Ehlers-Danlos syndrome – a photovoice study

Researcher
Dr Danielle Stephens-Lewis & Jo Foster, University of Gloucestershire

Summary

This research project aims to understand how Health-Related Quality of Life is experienced by people living with Ehlers-Danlos syndrome (EDS) and how it might best be measured.  Understanding and measuring Health-Related Quality of Life can be important for assessing the impact of a chronic disease, how it can be managed and how best to design meaningful interventions. This study explores the unique perspectives of quality of life as it is experienced by people who live with the conditions.

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Companionship and well-being for people living with hypermobile Ehlers-Danlos syndrome

Researcher
Dr Danielle Stephens-Lewis, Dr Kim Schenke and Jo Foster, University of Gloucestershire

Summary

There is much insight into the bond shared between humans and their dogs, as well as the many benefits dog guardianship can have on human health. However, less is known regarding the potential impact of dogs as pets, perceived companionship, and canine behaviour. Given the ever-growing rate of pets being included in therapeutic interventions, this research aims to consider whether having a pet dog impacts on a range of health outcomes for those living with Ehlers-Danlos syndrome, as well as possible interactions between canine behaviour, attachment, and overall well-being.

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Medical Photographs: Patient perceptions of medical photography of dermatological conditions

Researcher
Nicholas Phillips and Dr Jui Vyas, Cardiff University

Summary

This pilot study is an attempt to understand some of the patient factors behind the reasons for inadequate representation of patients of skin of colour in dermatology images. In addition the researchers would also like to determine if there are any other factors that influence a patient’s consent to medical photographs of their dermatological (skin) conditions. Therefore, the aim of the study is to determine if patient demographics influence perception of medical photography of dermatological conditions.

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Exploring the experiences and therapeutic needs of autistic children

Researcher
Kirsten Pearson MSc, MBPsS and Dr Danielle Stephens-Lewis, University of Gloucestershire

Summary

Research shows that autistic individuals are more likely to face adverse childhood experiences. This study will help to determine the prevalence of adverse childhood experiences (how widespread they are) and other related characteristics in those who are autistic. The study involves completing a survey online, which is likely to take from 20 to 50 minutes. Participants must be at least 18 years old.

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