Please find answers to some questions you might have about this project.
Who can take part?
The online survey for this project is now closed. We surveyed a broad range of participants for the first part of 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 was eligible to take part. Individuals who have expressed an interest in participating in future research will be contacted later in the year.
What will happen if I take part?
If you chose to take part in the survey you will have been given a consent form to complete and then you will have completed the online questionnaire. If you provided your email address to take part in the prize draw for an Amazon voucher, you will be contacted by the end of March 2020 if you were randomly selected. If you have provided your contact details to take part in further research, then you will be contacted by the end of June 2020.
Do I have to take part?
Participation for the survey was completely voluntary and you will have provided consent when you completed it. The deadline for withdrawing your data from the survey was 31 December 2019.
Participation in the upcoming interviews is also completely voluntary and there is no obligation to take part, even if you previously expressed an interest in participating.
How is this project funded?
The CENSSAS study is funded by the Economic and Social Research Council (ESRC) through the London Interdisciplinary Social Science Doctoral Training Partnership, https://liss-dtp.ac.uk/ and by King’s College London and Wellcome’s Institutional Strategic Support Fund.
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 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?
If you took part in the survey, then 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.