EDSAUS are pleased and excited to be able to tell you all about a major EDS study that is happening through the University of Sydney, Australia and to invite you to consider becoming a part of the study as they are still looking for 120 participants from around the country. I do have documents with more detailed info about the study, but thought I would just share 'must know' information with you all here as I have with all EDSAUS members (so if you are a member of EDSAUS - You may have seen this already
This study is aimed at adolescents (over 16) and adult patients who have:
- Been diagnosed with EDS Hypermobile Type (or a combination of Types, one of which being Hypermobile Type)
- Been diagnosed as having Joint Hypermobility Syndrome/Benign Joint Hypermobility Syndrome
- Generalised hypermobility who meet the Brighton criteria (see attachments) - even if they haven't been given a formal diagnosis of any kind
The overall goal of this study is to determine the prevalence of the broad range of signs and symptoms in an adult population who are perceived as being hypermobile.
To be a part of this study, participants simply need to contact Anne Krahe and she will send you a detailed questionnaire to fill in (taking about 30mins) which covers things like age, ethnicity, joint pain, soft tissue injury history, family history, fatigue, episodes of fainting or stress incontinence, gastrointestinal symptoms and history of low trauma fractures. Your height and weight will be recorded and then a series of physical tests will follow such as assessing your hypermobility, skin elasticity and thickness, balance, joint laxity etc.
For those living in Sydney, physical testing will take place at the Faculty of Health Sciences in Lidcombe NSW, or possibly in your own home at a time that suits you if you are unable to travel. Interstate participants are encouraged to fill in the questionnaire, and if, in the future we have enough participants and a venue in various states, we may possible be able to organise a day where physical assessment can take place. Even if it turns out that physical testing cannot be performed, filling in the questionnaire is crucial to the data collection aspect of this study.
Because this study is completely voluntary, participants may choose to withdraw at any time. Any and all aspects of the study are strictly confidential and while a report of the study may be submitted for publication, all participants will remain anonymous and unidentifiable.
I urge all our members who meet the criteria to consider applying to participate. The researchers need a large pool of patients with varying degrees and severities of EDS Hypermobile Type/JHS/Generalised hypermobility to be able to compile a broad, solid list of data that gives them a proper insight into this particular group of patients. This study is the first of its kind here in Australia, and it is important to support these studies locally, not only so we can get statistics on various populations of patients, but so that we as a country can contribute to the worldwide effort of piecing together of EDS, its genes, prevalence, research and management options.
If you would like more information about this study, please do not hesitate to contact Anne Krahe via email at
akra2983@uni.sydney.edu.au - she is more than willing to discuss this study with potential participants and will be able to answer any questions you may have.
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