Research

Status:

Recruiting

Examining the Impact of Symptoms on Exercise Self-Efficacy in Adults with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorder.

Target Audience:

Adults living with hEDS/HSD

Status:

Recruiting

The role of caregiver's perceptions of their child's scoliosis severity in caregiver medical traumatic stress

Target Audience:

Status:

Recruiting

The use of Dynamic Fabric Elastomeric Fabric Orthoses to support exercise and function in people with hypermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder and shoulder symptoms: A survey.

Target Audience:

Adults with hEDS or HSD who have shoulder problems

Status:

Recruiting

Exploring physical activity and wellbeing in females aged over 18 and under 70
living with hypermobility.

Target Audience:

Sex:, 18-69, English Speaking, UK resident, Available via Zoom, see main text for detailed medical exemptions.

Status:

Recruiting

Ehlers-Danlos Syndrome (EDS) and Psychiatric Morbidity in an Adult Population

An opportunity to participate
in Health Psychology research
by the University of Surrey

Target Audience:

Over 18 with EDS

Mountain range, complete with snowcaps. In the foreground, a pine cone. Visible behind it a mature fir.

Status:

Recruiting

Transition from child to adult services survey (NCEPOD)

Transition from Child to Adult Services

Target Audience:

Young People, and parents/carers of young people.

Status:

Recruiting

The Open Seam

Target Audience:

Women (aged 30–60) with lived experience of adaptive clothing needs

Status:

Recruiting

CLOSED: Hypermobility & Pain Online Meetings

Investigating the need for non-pharmacological pain management interventions for people with hypermobility disorders

Target Audience:

Adults with symptomatic hypermobility (HSD and hEDS), friends and family members, and professionals who support people with symptomatic hypermobility are all welcome

A completed spider graph showing symptoms weighted to NMSK, depression and pain.

Status:

Recruiting

Final Stage Spider Validation

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

Target Audience:

Persons between 13 and 65 years diagnosed with symptomatic hypermobility, hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD)

Status:

Recruiting

[RECRUITING] An exploration on the understanding, perception and views of the value of physical activity for patients with Ehlers Danlos Syndrome: a quantitative study.

An exploration on the understanding, perception and views of the value of physical activity for patients with Ehlers Danlos Syndrome: a quantitative study.

Target Audience:

18+ EDS diagnosis, fluent English.

.ac.uk for more information. The image also contains a QR code :)

Status:

Recruiting

Chronic Illness Parenting Study

Parenting children with Chronic Illness

Target Audience:

Parents of children aged 5-12 with a chronic illness.

Logos of research partners, the University of Manchester, European School of Osteopathy and University College London

Status:

Recruiting

Exploring the knowledge, assessment and management of symptomatic hypermobility in
adults among allied health professionals in UK. A national survey using the Modified HHQ

Target Audience:

Research

Examining the Impact of Symptoms on Exercise Self-Efficacy in Adults with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorder.

The role of caregiver's perceptions of their child's scoliosis severity in caregiver medical traumatic stress

The use of Dynamic Fabric Elastomeric Fabric Orthoses to support exercise and function in people with hypermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder and shoulder symptoms: A survey.

Exploring physical activity and wellbeing in females aged over 18 and under 70 living with hypermobility.

Ehlers-Danlos Syndrome (EDS) and Psychiatric Morbidity in an Adult Population

Transition from child to adult services survey (NCEPOD)

The Open Seam

CLOSED: Hypermobility & Pain Online Meetings

Final Stage Spider Validation

[RECRUITING] An exploration on the understanding, perception and views of the value of physical activity for patients with Ehlers Danlos Syndrome: a quantitative study.

Chronic Illness Parenting Study

Exploring the knowledge, assessment and management of symptomatic hypermobility in adults among allied health professionals in UK. A national survey using the Modified HHQ

Exploring physical activity and wellbeing in females aged over 18 and under 70
living with hypermobility.

Exploring the knowledge, assessment and management of symptomatic hypermobility in
adults among allied health professionals in UK. A national survey using the Modified HHQ