Current Ehlers-Danlos Society Research

HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study

For more information, click here.

The Ehlers-Danlos Society has started recruitment for participants in the HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study, devoted to finding the underlying genetic markers for hypermobile EDS (hEDS).

In February 2018 The Ehlers-Danlos Society announced the largest single donation in its history to establish an international research network of leading physicians, geneticists, and other health professionals devoted to finding the underlying genetic markers for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD).

HEDGE Study, the search for the genetic cause of hEDS

EDS Research Projects from the National Institutes of Health

ClinicalTrials.gov: Ehlers-Danlos Syndrome

Nutrition and EDS

We are urgently trying to raise £250,000 for research to look at the effects of changes to diet on the symptoms of hypermobile EDS (hEDS).

hEDS is also associated with a range of gut disorders, including acid reflux and irritable bowel syndrome. There are no drugs that target the connective tissue abnormality. Current treatments include medications to reduce symptoms, alongside physiotherapy for muscle and joint issues.

Good nutrition is essential for connective tissue repair and general healing. Certain nutrients are needed for the body to make collagen and support connective tissue function. Identifying specific nutrients needed for connective tissue function is important.

This planned research will be conducted by Professor Qasim Aziz and Lisa Jamieson at the Wingate Institute of Neurogastroenterology, Barts & The London School of Medicine & Dentistry, Queen Mary University of London. The study will trial a diet-based nutritional intervention, to determine whether symptoms can be reduced in hEDS patients of any age. This intervention has the potential to improve quality of life of patients with hEDS, through simple, inexpensive but effective dietary measures, while reducing treatment costs.

For more information, please visit our Nutrition and EDS page.