Get involved with Research

recruitment poster hEDS womens survey

We are currently looking for people who meet the following criteria to complete a 30 minute survey in relation to their childbearing experiences:

  • Women who have been diagnosed with either hypermobile Ehlers-Danlos Syndrome and (hEDS), Hypermobility Spectrum Disorders (HSD), EDS type III, EDS hypermobility type, or Joint Hypermobility Syndrome
  • Those who are over the age of 18 years
  • Those who have given birth in either the UK, Ireland, USA, Canada New Zealand, or Australia since 2007

If you meet the above criteria and would like to complete this survey then

please click HERE

What is the purpose of this survey?

  •          To identify the childbearing outcomes associated with hypermobile Ehlers Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorders (HSD)
  •          To explore experiences of maternity care among women with hEDS/HSD
  •          To evaluate the impact of recently published maternity care considerations for that childbearing the context of a hEDS/EDS diagnosis
  •          To identify ways in which maternity care could be improved for women with hEDS/ HSD.

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recruitment poster hEDS maternity staff survey

We are also looking for maternity staff  (anyone who provides clinical care to childbearing women) in the UK, Ireland, USA, Canada, New Zealand, or Australia to complete a 20 minute questionnaire about providing maternity care to women with hypermobile Ehlers-Danlos syndrome (hEDS) and/or Hypermobility Spectrum Disorders (HSD)

If you are a maternity staff member and would like to complete this survey,

please click HERE 

Please note: To participate, you DO NOT need to have knowledge or experience of caring for women with hEDS/HSD.

If you are a maternity staff member and would like to complete this survey,

please click HERE 

What is the purpose of this survey?

To explore awareness and knowledge of hypermobile Ehlers-Danlos Syndrome and (hEDS) and Hypermobility Spectrum Disorders (HSD) among maternity staff To explore what decisions maternity staff may make when caring for a women with hEDS/HSD To indicate how maternity staff could be supported to care for women with hEDS/HSD. A 2018 review was published which detailed maternity care considerations for women with hEDS/HSD. For participants who have read this review, this survey will also explore whether and how understanding and practice related to hEDS/HSD may have been impacted. Please note that if you have not read this review, you can still complete this survey.

Types of staff we want to hear from:

  • Consultant midwife
  • Senior midwife
  • Midwife
  • Student midwife
  • Nurse midwife
  • Maternity support worker
  • Junior obstetrician
  • Obstetric registrar
  • Consultant obstetrician
  • Junior anaesthetist
  • Consultant anaesthetist
  • Obstetric nurse
  • Physiotherapist
  • General Practitioner (GP)…etc.


If you are a maternity staff member and would like to complete this survey,

please click HERE 

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Follow this entire project online with #EDSMaternity

@GemmaSPearce @SallyPezaro@DrEReinhold@LaurenMPurdy

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2 thoughts on “Get involved with Research

  1. Pingback: Designing a platform to support midwives…The Research Protocol is out!…are you in? | #healthystaff4healthypatients

  2. Pingback: Midwives in distress: Working towards a consensus in the solution | #healthystaff4healthypatients

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