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  1. What we do
  2. Research

Research

The HMSA doesn't fund research directly but we're often asked to share open projects with our members and followers in order to help the researchers recruit participants. 

Closed: Children 5-11 with hypermobility syndromes (Billings)

This study is inviting Primary School children aged 5-11 years to tell me what it is like living with a hypermobile Ehlers Danlos Syndrome (hEDS) or generalised Hypermobility Spectrum Disorder (gHSD). I also want to talk to their parent /guardian to learn what it is like looking after a child with hEDS or gHSD diagnosis. Read more

Published: 7th February, 2020

Updated: 20th January, 2021

Author: Communications Director

Related topics:
  • Research

CLOSED: The hypermobile voice

Survey based investigation of voice in people with symptomatic hypermobility. Read more

Published: 16th October, 2020

Updated: 23rd December, 2020

Author: Communications Director

Related topics:
  • Research
CLOSED: Investigating the Use of Wearable Technology to Monitor Postural Tachycardia Syndrome

CLOSED: Investigating the Use of Wearable Technology to Monitor Postural Tachycardia Syndrome

This study is now closed. A survey and a series of follow up interviews about opinions of and personal experiences with wearable technology. Read more

Published: 25th August, 2020

Updated: 23rd December, 2020

Author: Hannah Ensor

Related topics:
  • Research

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

Recruiting Allied Health Professionals - This is not a patient survey, please do not apply unless you're in the target group of professionals working with adults with hypermobility syndromes. Read more

Published: 20th November, 2020

Updated: 24th November, 2020

Author: Communications Director

Related topics:
  • Research

RECRUITING: Obstetric and Gynecologic Experiences of Women with Ehlers Danlos Syndrome

Survey study from the University of Toronto for people with Gynaecological or Obstetric experiences who have EDS. Read more

Published: 16th October, 2020

Updated: 23rd October, 2020

Author: Communications Director

Related topics:
  • Research
RECRUITING: Does psychological flexibility moderate the efficacy of activity pacing in chronic pain?

RECRUITING: Does psychological flexibility moderate the efficacy of activity pacing in chronic pain?

A study into activity pacing for people over 16 and living with chronic or persistent pain. Read more

Published: 25th August, 2020

Author: Hannah Ensor

Related topics:
  • Research
CLOSED:  Have you travelled for Cranial/Spinal Surgery outside the UK?

CLOSED: Have you travelled for Cranial/Spinal Surgery outside the UK?

CLOSED: EDS/HSD UK residents who've had spinal/cranial surgery outside the UK. Read more

Published: 22nd May, 2020

Updated: 27th July, 2020

Author: Communications Director

Related topics:
  • Research

CLOSED: EDS Maternity Staff Survey

This study is open to people caring for childbearing people with an hEDS or HSD diagnosis. Midwives, Doctors, Obstetricians, Sonographers, Gynaecologists, Physiotherapists and anyone else providing medical care to people during or after pregnancy is eligible. Read more

Published: 15th July, 2019

Updated: 26th June, 2020

Author: Communications Director

Related topics:
  • Research
CLOSED: A Qualitative study exploring perceptions and experiences of Exercise, Physical Activity and Sport for Males with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndrome (hEDS)

CLOSED: A Qualitative study exploring perceptions and experiences of Exercise, Physical Activity and Sport for Males with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndrome (hEDS)

THIS STUDY IS NOW CLOSED A Qualitative study exploring perceptions and experiences of Exercise, Physical Activity and Sport for Males with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers Danlos Syndrome (hEDS) Read more

Published: 1st April, 2020

Updated: 22nd June, 2020

Author: Communications Director

Related topics:
  • Research

RECRUITING: Spider Study (Adolescents)

Impact of Hypermobility Questionnaire for Adolescents. Ages 13-18 Read more

Published: 31st May, 2020

Author: Communications Director

Related topics:
  • Research
RECRUITING: The Lived Experience of Joint Hypermobility Syndrome in Dancers: A Phenomenological Study

RECRUITING: The Lived Experience of Joint Hypermobility Syndrome in Dancers: A Phenomenological Study

18+, JHS in competitive/professional dancers. Read more

Published: 9th November, 2020

Author: Communications Director

Related topics:
  • Research

RECRUITING:: Young adults’ experiences of seeking information about chronic pain using the internet and social media

Read more

Published: 13th September, 2020

Author: Communications Director

Related topics:
  • Research
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Showing 10 of 12

Latest

  • Rachel King (Trustee)

    Rachel King (Trustee)

  • Communicating about hidden disabilities and symptoms (Webinar) April 2021

    Communicating about hidden disabilities and symptoms (Webinar) April 2021

    A 1 hour webinar on "Communicating about hidden disabilities and symptoms" with Hannah Ensor, exploring effective ways to improve communication with, and help gain understanding from, family and loved ones (who we may all be spending a LOT more time with for the immediate future!)

  • Help me change the lives of hypermobile people!

    Help me change the lives of hypermobile people!

    Covid 19 changed all our plans in 2020, for me it meant I couldn't do my last large challenge. I have come up with a new challenge that fits around family restraints and is Covid proof.

  • 2021 HypnOT Episode 5 - Weight management

    2021 HypnOT Episode 5 - Weight management

    Start 2021 as you mean to go on... #HypnOT - a series of five live broadcasts introducing, or gently reminding our members about some of the strategies and skills we can all use to help manage our condition.

Most read

  • What are hypermobility syndromes?

    Hypermobility syndromes is an umbrella term for a number of complex heritable disorders of the connective tissue (HDCTs) which feature among a diverse constellation of symptoms, some hypermobility in some or all of the musculoskeletal system.

  • Response to BSR statement March 4th 2020

    Response to BSR statement March 4th 2020

    We are aware of the BSR statement and have prepared a response detailing our position on the subject.

  • "New study confirms systemic nature of hypermobility syndromes, that late diagnosis is common and associated with negative health outcomes."

    This long awaited and eagerly anticipated paper has been published today on BMJ Open. Authors of this study are Joanne C Demmler, Mark D Atkinson, Emma J Reinhold, Ernest Choy, Ronan A Lyons, Sinead T Brophy.

  • HMSAware - Marfan syndrome, EDS is not the only 'fruit' of the hypermobility family tree

    HMSAware - Marfan syndrome, EDS is not the only 'fruit' of the hypermobility family tree

    There's more to connective tissue disorders than EDS - Marfan patients often feel aggrieved that they (and others) are left out of the hypermobility conversation which is largely dominated by Ehlers-Danlos syndrome. #HMSAware

  • Hypermobility Syndromes Association COVID19 collated resources, regularly updated.

    Hypermobility Syndromes Association COVID19 collated resources, regularly updated.

    Reliable and credible information on Coronavirus for people with hypermobility related health issues, a collation of solid advice from International, European and UK organisations dealing with associated conditions.

  • Hormones and Hypermobility

    Hormones and Hypermobility

    How various hormones interact with hypermobility, including why symptoms may worsen around menstruation and things to consider regarding hormonal contraceptives.

  • HSD: Symptoms

    HSD: Symptoms

    A short overview of common symptoms of hypermobility spectrum disorder

  • HSD: Diagnostic Criteria

    HSD: Diagnostic Criteria

    The diagnostic criteria for hypermobility spectrum disorder (HSD)

  • Bowel problems

    Bowel problems

    Common bowel problems in HSD and EDS

  • What is the Beighton Score?

    A brief summary of the beighton scale, it's uses and limitations.

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