Detailed Insights into Gastrointestinal Symptoms and Traits in hEDS.
Research type
Research Study
Full title
Detailed phenotyping and endotyping of hypermobile Ehlers-Danlos Syndrome patients with gastrointestinal symptoms.
IRAS ID
350894
Contact name
Qasim Aziz
Contact email
Sponsor organisation
Queen Mary University of London
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Background: Hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder characterized by joint hypermobility, skin elasticity, and tissue fragility. Many individuals with hEDS experience gastrointestinal (GI) symptoms, such as discomfort after eating, bloating, and nausea, which can significantly impact their quality of life. However, the reasons for these digestive issues in hEDS patients are not well understood.
Study Aim: The DIGEST-hEDS study seeks to explore the digestive health of individuals with hEDS, focusing on their responses to food intake and the underlying mechanisms contributing to their GI symptoms.
Study Design: We plan to recruit 216 participants, divided into four groups:
108 individuals with hEDS who also have Functional Dyspepsia (FD), a condition marked by persistent upper abdominal discomfort.
36 individuals with hEDS without FD.
36 individuals with FD but without hEDS.
36 healthy individuals without hEDS or FD.
Methods: Participants will undergo a series of assessments, including:
-Clinical Evaluations: Detailed medical histories and symptom assessments to understand the nature and severity of GI symptoms.
-Physiological Tests: Monitoring bodily responses to food intake, such as stomach emptying rates and gut permeability.
- Molecular Analyses: Collecting blood and tissue samples to examine immune responses, including allergies, and pain-related markers.
Potential Benefits: By identifying the specific factors contributing to GI symptoms in hEDS patients, this study aims to:
- Enhance our understanding of the relationship between hEDS and digestive disorders.
- Inform the development of targeted treatments aimed at improving the quality of life for those affected.
Conclusion: The DIGEST-hEDS study represents a comprehensive effort to uncover the causes of digestive issues in individuals with hEDS. Through thorough clinical, physiological, and molecular evaluations, we aim to shed light on these complex interactions and pave the way for better management strategies.REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
25/SW/0142
Date of REC Opinion
14 Jan 2026
REC opinion
Further Information Favourable Opinion