What is the name of this project?

STIGMA OF EPILEPSY: A GLOBAL SURVEY

Are there risks and benefits to me in taking part in this study?

A potential risk associated with this research project is the inconvenience to the participants and potential distress as some survey questions may be confronting. 

The benefit of this study is to acknowledge stigma in society and make action plans to reduce it, mainly in future generations.  This study will provide knowledge as a means to raise awareness of and provide education about epilepsy as a commonly stigmatized disease, with the overall aim to reduce the level of discrimination against the marginalized community of affected individuals in a global society.

Will taking part in this study (or traveling to) cost me anything, and will I be paid? 

Participation in this research will not incur any cost to the participants. There will be no reimbursement provided for participation in the research and it is completely voluntary.

What if I don't want to take part in this study? 

Participation in this research is entirely your choice. Whether or not you decide to participate, is your decision and will not disadvantage you. Only those who give their informed consent will be included in the project.

What if I participate and want to withdraw later? 

If you decide that during this survey, you no longer wish to participate, you may withdraw by closing the browser. . As long as  the survey is not submitted, no answers will be recorded. 

How will my confidentiality be protected? 

To uphold confidentiality and ensure the anonymity of respondents, the questionnaire will not include any inquiries pertaining to personal data. By abstaining from soliciting personal information, the study aims to safeguard the privacy of participants. The administration of the questionnaire will be facilitated through Survey Monkey, which provides a secure and reliable platform for data collection. This approach enhances data protection and minimizes the risk of unauthorized access to sensitive information. Through the utilization of an anonymous questionnaire and the implementation of Survey Monkey, the study strives to maintain the confidentiality of participants' responses. This data may be used for any projects of similar kind of interest in the future. 

What will happen to the information that I give you?  

The data collected will be kept securely on the devices of the researchers. Only the researchers and the survey administrator will have access to this information. At the end of the survey, the collected information will be with researchers, who will hold the information for up to five years. This data may be used for future projects related to the topic. After the information is collected, you won’t be able to access the results of the study. 

What should I do if I want to discuss this study further before deciding?

If you would like further information, please contact Associate Professor Mohmad Farooq Shaikh at mshaikh@csu.edu.au or +61 2 6365 7534 (Mon-Fri 9am to 1pm) 

Who should I contact if I have concerns about the conduct of this study?

Charles Sturt University’s Human Research Ethics Committee has approved this project. If you have any complaints or reservations about the ethical conduct of this project, you may contact the Committee through the Research Integrity Unit via the following contact details:

The Presiding Officer

Human Research Ethics Committee

Research Integrity Unit

Locked Bag 588

Wagga Wagga NSW 2678

Phone: (02) 6933 4213

Email: ethics@csu.edu.au