Perspectives and experiences of people with hypermobile Ehlers-Danlos syndrome and hypermobility related conditions in relation to functioning, disability and management
What are the benefits and risks in taking part in this study?
There is no payment or reward for completing this survey. The potential benefit of this survey, though, is that clinicians and researchers will be more informed regarding the current level of functioning, disability, and management of people with hEDS/HSD in Australia. This may result in greater understanding and empathy regarding the potential impact of hEDS/HSD on functioning and disability. Ideas for enhancing health care treatment and management may also be identified and trialled in the absence of higher level research evidence being available to direct clinical practice.
There are minimal risks associated with participating in this study. The time and energy taken to fill out the survey may be inconvenient and temporarily fatiguing for you. Some questions also may potentially cause you some distress as you reflect and report on the impact of the condition on your functioning or disability, and/or unpleasant treatment or management experiences. If you do become upset and distressed, please discontinue the survey and seek advice from your general practitioner or appropriate health care professional.
Lifeline Australia is a crisis support counselling service can also be contacted via phone on 13 11 14 or their website at www.lifeline.org.au.
What if I don't want to take part in this study?
Participation in this research is completely voluntary. Participation in the study can be stopped at any time without consequence. Your data can be removed from the study if you decide to withdraw your consent during the data collection period.
Can I take breaks during the survey?
Yes. If you would like to take a break please finish the section of the survey you are on before you leave, then access the individual links to continue through the survey. This will prevent you having to re-type answers, which you will be required to do if you go back to the full survey link. You will be emailed the individual links after providing consent.
Is this study funded?
This project has no external funding.
How will my confidentiality be protected?
Your name and email address will only be used for collating screening and consent forms and for distributing the survey. Survey responses will be de-identified with the use of numerical codes. Identifying details will be removed prior to data analyses and will not be included in any reports, presentations or publications.
What will happen to the information that I will give you?
Personal information will be used only for survey administration purposes by the principal researcher. Survey responses will be de-identified before analyses and in any reports, publications, or presentations. Participant information and responses will be stored electronically on a password protected computer and a shared drive folder at Charles Sturt University for at least 5 years as per mandatory storage and legislation requirements.
Will I be able to access the results of this study?
If you would like to receive a copy of any published article, or a copy of any presentations by the research team, you may request this my emailing the principal researcher - Rohan Toft - at [email protected]
What should I do if I want to discuss this study further before I decide to consent or if I have a concern about the conduct of the study?
if you have any questions or require further information please contact the principal researcher - Rohan Toft - at [email protected].
A hard copy of the participant information sheet can be found here.
There is no payment or reward for completing this survey. The potential benefit of this survey, though, is that clinicians and researchers will be more informed regarding the current level of functioning, disability, and management of people with hEDS/HSD in Australia. This may result in greater understanding and empathy regarding the potential impact of hEDS/HSD on functioning and disability. Ideas for enhancing health care treatment and management may also be identified and trialled in the absence of higher level research evidence being available to direct clinical practice.
There are minimal risks associated with participating in this study. The time and energy taken to fill out the survey may be inconvenient and temporarily fatiguing for you. Some questions also may potentially cause you some distress as you reflect and report on the impact of the condition on your functioning or disability, and/or unpleasant treatment or management experiences. If you do become upset and distressed, please discontinue the survey and seek advice from your general practitioner or appropriate health care professional.
Lifeline Australia is a crisis support counselling service can also be contacted via phone on 13 11 14 or their website at www.lifeline.org.au.
What if I don't want to take part in this study?
Participation in this research is completely voluntary. Participation in the study can be stopped at any time without consequence. Your data can be removed from the study if you decide to withdraw your consent during the data collection period.
Can I take breaks during the survey?
Yes. If you would like to take a break please finish the section of the survey you are on before you leave, then access the individual links to continue through the survey. This will prevent you having to re-type answers, which you will be required to do if you go back to the full survey link. You will be emailed the individual links after providing consent.
Is this study funded?
This project has no external funding.
How will my confidentiality be protected?
Your name and email address will only be used for collating screening and consent forms and for distributing the survey. Survey responses will be de-identified with the use of numerical codes. Identifying details will be removed prior to data analyses and will not be included in any reports, presentations or publications.
What will happen to the information that I will give you?
Personal information will be used only for survey administration purposes by the principal researcher. Survey responses will be de-identified before analyses and in any reports, publications, or presentations. Participant information and responses will be stored electronically on a password protected computer and a shared drive folder at Charles Sturt University for at least 5 years as per mandatory storage and legislation requirements.
Will I be able to access the results of this study?
If you would like to receive a copy of any published article, or a copy of any presentations by the research team, you may request this my emailing the principal researcher - Rohan Toft - at [email protected]
What should I do if I want to discuss this study further before I decide to consent or if I have a concern about the conduct of the study?
if you have any questions or require further information please contact the principal researcher - Rohan Toft - at [email protected].
A hard copy of the participant information sheet can be found here.
This survey has been approved by the Charles Sturt University Human Research Ethics Committee
(Approval no. H20372).
(Approval no. H20372).
If you have any complaints or reservations about the ethical conduct of this project, you may contact the HREC through the Ethics and Compliance Unit via the following contact details:
The Governance Officer
Human Research Ethics Committee Ethics and Compliance Unit
Charles Sturt University Locked Bag 588
Wagga Wagga NSW 2678
Te: (02) 6933 4213
Email: [email protected]
Any issues raised will be treated in confidence and investigated fully. You will also be informed of the outcome.
The Governance Officer
Human Research Ethics Committee Ethics and Compliance Unit
Charles Sturt University Locked Bag 588
Wagga Wagga NSW 2678
Te: (02) 6933 4213
Email: [email protected]
Any issues raised will be treated in confidence and investigated fully. You will also be informed of the outcome.
Once you have reviewed the above information please proceed to the informed consent page.