Please find answers to some questions you might have about this project. Further information can also be found in the project information sheet.
Who can take part?
We require a broad range of participants for this study, including people with a Central Sensitivity Syndrome (CSS), autistic people, and individuals without a CSS or autism. Anyone over the age of 18 is eligible to take part. Including participants that do not have an ASC or physical health problems, as well as people on the spectrum and people with a CSS, will strengthen the study and ensure that any associations found can be thoroughly investigated.
What will happen if I take part?
If you choose to take part in the study you will be given a consent form to complete and then you will be able to complete the online questionnaire. The questionnaire will take between 30 and 45 minutes to complete. Please complete all of the questions if you can. There will be questions about psychological traits, mental health, and sensory sensitivity, as well as illness symptoms. At the end of the questionnaire, you will be shown a summary of your scores for each section, along with a brief description about what each questionnaire measures.
Do I have to take part?
Participation is completely voluntary. You should only take part if you want to and choosing not to take part will not disadvantage you in anyway. If you choose to take part you will be asked to provide your consent. To do this you will be asked to indicate that you have read and understand the information provided and that you consent to your anonymous data being used for the purposes explained.
You are free to stop and withdraw from the study at any point during completion of the survey, without having to give a reason, and can do so by closing down the web page or clicking ‘no’ when asked to continue. Withdrawing from the study will not affect you in any way.
Please be aware that once you submit the survey, unless you have provided a unique identifier or a contact email address, it will no longer be possible to withdraw from the study because the data will be fully anonymous. If you do choose to provide an identifier, you will be able to withdraw your data from the study up until 31st December 2019, after which withdrawal of your data will no longer be possible as the anonymised data will have already been included in the final report and thesis.
Are there any incentives to take part?
If you choose to participate, and are happy to provide your email address, then you will be entered into a prize draw to win a £50 Amazon voucher.
What are the possible risks of taking part?
Most of the questions you will be asked in the questionnaire should not cause any discomfort, and there are no other risks associated with this study, however you should be aware that some of the questions will ask you about mental and physical health. The main disadvantage of taking part is that it will take 30 to 45 minutes of your time.
What are the possible benefits of taking part?
Your participation will contribute to scientific research, and a summary report of the study findings can also be sent to you if requested. If you would like to receive this, please supply your email address at the end of the survey. There are no other benefits to you as an individual in taking part. You will have the option to be included in a prize draw for a £50 Amazon voucher if you wish, but this is not compulsory.
How is this project funded?
This study is being funded by the Economic and Social Research Council (ESRC) through the London Interdisciplinary Social Science Doctoral Training Partnership, https://liss-dtp.ac.uk/.
What will happen to the results of the study?
The results of the study will be summarised and posted onto the project website, as well as being shared through the National Autistic Society and the Fibromyalgia Action UK. The results will be used in my doctoral thesis, as well as being published in an academic journal. Any publications will be shared on the project website in addition to a summary of the results. A summary report of the findings will also be emailed to participants that have requested it. The anonymised data set will also be archived at the UK Data Service, which is open access. Depending on the findings of the study, I also hope to write a book, which would be publicly available.
What about data protection?
Your data will be processed in accordance with the General Data Protection Regulation 2016 (GDPR). The data you provide will be completely anonymised, and if you choose to provide a contact email address, this will not be tied to your questionnaire answers. You will not be identified at any stage of the research process, including the final report.
Please see the project information sheet for further details about data handling and protection.