Understanding Mal de Debarquement Syndrome (MdDS)- Participant Information Sheet (General)

You are invited to participate in a research study being conducted by Dr Cherylea Browne and Dr Rachael Brown from Western Sydney University (WSU). This research aims to contribute to the understanding of the underlying mechanisms of MdDS. Specifically, this study seeks to collate data regarding the basic clinical features of MdDS, which might be unidentified or overlooked due to the subjective nature of the condition. We aim to collect survey data from MdDS patients, both within the state, nationally and internationally.
How is the study being paid for? The study is sponsored by WSU.
What will I be asked to do? Participation in this study involves completing an online questionnaire about your MdDS onset, symptoms, triggers, health and well-being, and therapies that you have found useful in managing your symptoms. By completing the questionnaire you are giving consent for your anonymous responses to be used for research purposes and to be published.
How much of my time will I need to give? Completing the questionnaire may take between 10-30 mins.
What benefits will I, and / or the broader community, receive for participating? The significance of this explorative project is a focus on the understanding of the prevalence, associated risk factors and common triggers of MdDS, thereby potentially enabling the development of more concentrated treatments or therapies. This study has the potential to generate a comprehensive guide concerning symptoms and triggers, which may benefit newly diagnosed patients and neurologists alike.
Will the study involve any discomfort or risk for me? If so, what will you do to rectify it? It is unlikely that this study will cause any discomfort to you. As it is with any study of this nature, it may be seen as a burden or minor inconvenience; however, as it is optional to complete the questionnaire you may abstain from taking part.
How do you intend to publish the results? The findings of the research will be published in peer-reviewed journals, presented at national and/or international conferences and described in internal reports for WSU research committees. All information will be provided in such a way that the participant cannot be identified.
Can I withdraw from the study? Participation is entirely voluntary and you are not obliged to be involved. You may complete this questionnaire anonymously (you cannot withdraw your data after submission) or non-anonymously (you can withdraw your data after submission). Your decision to participate in this study in no way affects your professional relationship to the research staff at WSU, their colleagues or the governing institution.
Data storage There are a number of government initiatives in place to centrally store research data and to make it available for further research. For more information, see http://www.ands.org.au/ and http://www.rdsi.uq.edu.au/about.Regardless of whether the information you supply or about you is stored centrally or not, it will be stored securely and it will be de-identified before it is made available to any other researcher. Please note that the minimum retention period for data collection is 5 years post publication.
What if I require further information? Please contact Dr Browne via email c.browne@westernsydney.edu.au should you wish to discuss the research.
What if I have a complaint? This study has been approved by the WSU Human Research Ethics Committee (H11962).If you have any complaints or reservations about the ethical conduct of this research, you may contact the Ethics Committee office on Tel +61 2 4736 0229 or email humanethics@westernsydney.edu.au.Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.

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