Scleroderma & Raynaud's UK: Raynaud's Survey |
Information
General Information
Raynaud's is a common phenomenon that affects up to 10 million people in the UK, in which the blood vessels in the extremities like the hands and feet become over-sensitive to cold, stress or other factors, and narrow or constrict. This often causes pain, tingling, and colour changes to the skin of the affected areas.
At Scleroderma & Raynaud's UK, we want to learn more about people with Raynaud's. By answering this anonymous questionnaire, you can help us to better understand Raynaud's phenomenon, and how it affects people across the UK and the rest of the world.
We appreciate your interest in participating in this online survey. You have been invited to participate as you have indicated that you experience symptoms of Raynaud’s phenomenon through SRUK’s online Raynaud’s Test. This survey has been co-produced with clinical and patient partners.
Please read through this information before agreeing to participate (if you wish to) by ticking the ‘I agree to take part’ box at the bottom of this page. You may ask any questions before deciding to take part by contacting SRUK’s research team, at info@sruk.co.uk
Do I have to take part?
You do not have to take part in this survey. Please note that participation is voluntary. If you do decide to take part, you may withdraw at any point for any reason before submitting your answers by closing the browser, and your answers will not be recorded.
How will my data be used?
We will not collect any data that could directly identify you in this survey. Your IP address will not be stored. We will take all reasonable measures to ensure that all data provided remains confidential.
The responses you provide will be stored in a password-protected electronic file held in Scleroderma & Raynaud’s UK’s OneDrive file with access restricted to the SRUK research team (Dr Ula Tymoszuk, Head of Research & Nick Jeffries-Owen, Research Manager). This may be used for internal research purposes, academic publications, conference presentations, and for publications on Scleroderma & Raynaud’s UK’s website. They may be shared with academic partners at UK research institutions, but no data or responses you provide can be used to directly identify you.
Research data will be stored for 5 years after publication, or public release of the work of the research.
Who will have access to my data?
The data you provide may be shared with SRUK's academic research partners. We would like to use the data in future studies, and to share data with other researchers (e.g. in online databases).
This survey has been reviewed by an independent ethics review panel based at the Ethox Centre.
If you have any questions, comments, or concerns about this research please contact info@sruk.co.uk, and a member of the research team will reply to your query.