hEDSOut
Research type
Research Study
Full title
Hypermobile Ehlers Danlos Syndrome healthcare usage and outcomes in England
IRAS ID
316261
Contact name
Harry Sharples
Contact email
Sponsor organisation
Walton Centre NHS Foundation Trust
Duration of Study in the UK
0 years, 10 months, 28 days
Research summary
Hypermobile Ehlers Danlos Syndrome (hEDS) is a subtype of a larger group of connective tissue disorders known as Ehlers Danlos Syndrome (EDS). hEDS can result in a plethora of symptoms affecting multiple body systems. There is little data demonstrating service use in England by the hEDS population. Further, a recent study by Brodbelt et al showed that hEDS patients in the UK are travelling abroad for surgical spinal fixation for symptomatic relief and there is limited evidence for the outcome of such treatment or the input of NHS England post-operatively.
The aim of the present study is to collect, analyse and publish data about the hEDS population in England's service use, and outcomes from hospital episodes. Collecting data over a four-year period from 2018 to 2022 will allow the effect of the COVID-19 pandemic on services use and outcomes to be observed if present.
REC name
West of Scotland REC 3
REC reference
23/WS/0085
Date of REC Opinion
1 Jun 2023
REC opinion
Favourable Opinion