Survey on Women's Health and Symptoms of FND

* 1. PARTICIPANT INFORMATION SHEET

Thank you for your interest in this study looking at whether certain aspects of women’s health affect the severity of symptoms of functional neurological disorder (FND). Please read this information sheet before deciding whether to proceed with the survey.

Investigators

Dr Alexander Lehn

Department of Neurology, Princess Alexandra Hospital, Brisbane, Australia; School of Medicine, The University of Queensland, Brisbane, Australia

Dr David Palmer

Department of Neurology, Princess Alexandra Hospital, Brisbane, Australia

If you have questions or concerns about this research, you can contact the investigators at FND.Research@health.qld.gov.au

Aim of the Questionnaire

We aim to investigate whether certain aspects of women’s health affect the severity of symptoms in people who have FND. This aims to fill in a gap in knowledge about this relationship in people with FND, and may lead to different treatment approaches for people with FND in the future.

We hope that as a result of this survey, we may be able to identify patterns in how aspects of women’s health affect symptoms of FND that could allow improvements in FND treatment for some women.


What participation involves

Participation in this project is via Survey Monkey. Participation is voluntary, and all data collected will be anonymous. The survey will take approximately 5-10 minutes. The questionnaire involves questions about your symptoms of FND, your periods and/or menopause, and synptoms of women’s health problems that you may or may not have had.


Risks of participation

This questionnaire will ask questions about your symptoms of FND, and personal aspects of health including your periods, menopause, and operations that you might have had. You should consider whether answering questions about any of these things could be upsetting for you before deciding to complete the survey.


Ability to withdraw consent

At any point during the survey, you may close the survey in your internet browser to exit. If you do this, your answers to that point will be automatically deleted.

Participation in this research is voluntary. If you complete the survey, it is understood that you have consented to the data being analyzed in an anonymous manner for the purposes of research. Once you have submitted your answers to the survey, it is not possible to withdraw your data from the study.


Ethical and Data Safety Considerations

Your privacy and anonymity while participating in this study will be maintained at all times. No personal identifying data will be collected in the survey. Any subsequent publications will not allow identification of any individual. Electronic files will be stored in a password-protected format on a password-protected computer, as well as on Survey Monkey’s servers controlled from the United States.

At the end of the study, you will have the opportunity to provide your email address if you would like to be contacted about possible follow-up studies. If you chose to give your email address, your responses will no longer anonymous, and may be used to identify participants for future research. In the initial stages of data management, this email address will be in the same file as your survey data. There is a theoretical risk that if the data was stolen at that point, your survey responses could be linked to your email address. You should keep this in mind before deciding to provide your email address.

This study has been reviewed and approved by the Metro South Human Research Ethics Committee (EC00167). Should you wish to discuss the study in relation to your rights as a participant, or should you wish to make an independent complaint