About this survey
Parkinson’s UK is working with researchers at Lancaster University to understand more about how people with Parkinson’s and their loved ones are affected by the coronavirus. This will help us provide the support needed at this time and to campaign on behalf of people with Parkinson’s and their loved ones. As we want to collect and act on this information quickly, we are asking you to respond by May 17.
Who can complete the survey
People with Parkinson’s and partners, carers, family members and friends of people with the condition are all invited to complete this survey to share their experiences.
How to complete the survey
The questionnaire is in two parts. The first part is about your current experience of coronavirus and will take around 20 minutes to complete. The second part is about your general well-being and will take around 5 minutes.
You do not need to do it in one sitting – If you wish to take a break from filling in the survey, just click ‘Save and Continue’. You will be asked to enter your email address so a new survey link can be sent to you which will contain the data you have already inputted.
The survey must be completed online. Because of the current restrictions and home working we cannot provide paper copies. If you are a person with Parkinson’s, you can have a partner, carer, family member or friend help you complete the survey if you prefer. That person will also be invited to answer questions about their own experience.
We would like to invite you to take a similar survey again in a few months’ time to see what has changed. For this we will need your email address. This will be kept safely by Parkinson’s UK and as soon as the second round of data collection is complete, we will delete it. If you would rather not take part in the follow-up study, there is no need to provide your email address. The responses you provide will only be used in relation to the questions asked within the survey. You can read more about how Parkinson’s UK will use your data here
. All data sent to Lancaster University for analysis will be anonymous. The data collected may be used by Parkinson’s UK and the researchers at Lancaster University for academic publications and conferences. For this reason, Lancaster University will keep the data for a minimum of 10 years. If you have any questions about the survey, or experience any difficulties, please email Cathal Doyle (firstname.lastname@example.org).
- I have read and understood the information above
- I understand that my participation is voluntary
- I understand that I can withdraw at any time without giving a reason
- If I stop part-way through I understand that my information may still be used.
- I understand that my anonymous results will be shared with researchers from Lancaster University