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Research

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.

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Target Audience:

Adults with hEDS or HSD who have shoulder problems

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University of Strathclyde Logo

Status:

Recruiting

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

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Target Audience:

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

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.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.

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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

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:

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Status:

RECRUITING

Parental quality of
life and social support
in EDS/HSD

Study for parents/guardians of individuals with Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder
(HSD) looking at their quality of life and
perceptions of the social support that they
receive.

Target Audience:

Parents/guardians of people with EDS/HSD

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examples of a completed 'spider' tool, showing the symptom profile for the individual

Status:

CLOSED

Testing the 'Spider' screening tool

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

Target Audience:

18 to 65 years old, diagnosed with symptomatic hypermobility, HSD, or hEDS

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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)

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An incoming storm skyscape

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

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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.

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Black woman curled up hugging a pillow

Status:

Recruiting

Chronic Illness Survey Adventure.

Symptom Cluster Characterization in Complex Chronic Disease:

Target Audience:

Over 18, with PoTS, hEDS, MCAS, ME, CFS or Long COVID. Or healthy.

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UCL Logo in white on a purple background, with the text "STUDY PARTICIPANTS NEEDED Validating the Spider – a new screening tool for adolescents with symptomatic hypermobility Great Ormond Street Institute of Child Health - Jane Simmonds and Ellen Ewer"

Status:

Closed

Validating the Spider

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Target Audience:

13-18yo with symptomatic hypermobility

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Status:

CLOSED

Validating The Spider Tool

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Target Audience:

13-18yo with or without symptomatic hypermobility

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